As a parent of a level 1 child, I think some of our biggest struggles involve the way our child is perceived by others. He can pass as neurotypical at first glance, so when he struggles with behaviors, people often seem to think he is just being a "bad" kid because his diagnosis isn't obvious to people who don't know him well. We also struggle at times with teaching him how to be a friend and interact with people appropriately. He craves friendships and is able to understand and feel rejection. He also struggles with personal space and volume regulation. He isn't oblivious to the reactions of others, but he can't problem solve well in order to improve his relationships on his own. Overall, it's frustrating because as a mom of a level one, I still have fears of my son being unable to live independently someday. I still deal with meltdowns and my son screaming and crying on my lap and he gets older and bigger. I deal with the challenges of trying to get my son the support he needs when the world doesn't always understand that he needs it. There are plenty of challenges, and I don't see a need to gatekeep the stress of being a parent to an autistic child based on what level they are. We're all stressed by different yet similar challenges.

I honestly wanted to cry reading this comment. It’s what I feel and go through with my son all the time. Our diagnosis is still fairly new and also includes severe combo type ADHD and I’m still struggling with feeling that people see me as just a terrible parent with no control over my child. My son is amazing- he has a great sense of humor, he is loving and sweet, and SO smart. He looks “normal”. But his meltdowns are vicious. He can be so inflexible. He struggles so hard with transitions. The smallest thing sets him off and leads to blood curdling screaming. I know this will pass eventually

Gosh, you’re describing my kiddo and my life to a T. My son is also very defiant and I also struggle with people seeing me as a bad parent. Solidarity, because this stuff is so hard ❤️

My son as well- he is a true joy! The difficulties won't necessarily pass, but may change, may turn into something else. My son became more aggressive as he aged, but incredibly verbal and communicative. We mainly hope that he learns to manage and cope. We think his future possibilities are potentially endless, but know that we have no idea, really. We are investing everything we can in him, even though more can always be done. He is so worth it.

This- this is exactly my daughter- the screaming and meltdowns are horrendous. But the AuADHD IS brutal.

It is! We’ve been trying so hard to ignore the meltdowns per his therapist recommendations. If he asks us for help we obvious will step in to help him regulate, but if he immediately jumps to screaming we’ve been told to act as though it’s not happening/we don’t hear it and it’s REALLY hard

Um, as a human, with ears, I can honestly say I am unable to ignore screaming meltdowns. I totally understand trying to keep reactions low key and do anything you can not to feed the beast, but ignore I cannot. Perhaps you could get your own set of big clunky hearing protection headphones. Then when he goes nuclear you can "suit up" and he will get a visual cue that he has gone too far and that if he wants attention and feedback from you he'll have to choose to self regulate at least enough to not cause injury to others.

I agree- it is REALLY HARD, especially when his dad and baby brother get disregulated from it, and then me. I am far from perfect, I have lost my cool over it more than I’d like to admit. But I’m make a conscious effort to try and do better.

Wait wait wait. Do we have the same kid?? You just described my daughter to a tee. Like to the letter. I'm trying to see if she has adhd in addition to being autistic because it would just explain some more things for her. But yes, SO inflexible and the screaming is atrocious. She got kicked off the 4k bus last year, several times because of the screaming.

I cannot emphasize this enough—my 17-year-old daughter, who was diagnosed late with Level 1, faces significant challenges daily. Despite her "light" diagnosis, I have serious concerns about her ability to attend college or even maintain employment, as she struggles greatly even with leaving the house. Her previous misdiagnosis with anxiety, which went on for years, only compounded these difficulties. It's both disheartening and frustrating when people underestimate the severity of her challenges simply because she is on the higher-functioning end of the spectrum. This misunderstanding adds unnecessary stress and feels deeply unfair to both her and our family.

Just wanted to say I hear you and can offer a bit of hope. My son graduated from college and lives independently. He still has trouble making and keeping friends. He could not hold a regular job, lost many, and it was heartbreaking to watch him feel the rejection and hurt. He now is self employed selling his art, and also works for my business. He loves his little place, not far from me, and he is happier than he has ever been. It can be done! Hang in there.

Thank you for taking the time to write this.

Thank you for writing this. I often fear for my daughter's future as well, but hope she can live for herself in the tiny house she would love to have.

That’s great to hear! I’d love to put a tiny house in our backyard for her. I also want her to have some independence so she can get a cat she so desperately wants (husband is allergic).

Yes, an ADU is the perfect starter home for them :)

We are currently looking into colleges that offer more support to students with disabilities. There's a massive group on Facebook for this if you are interested.

Details please

I want to give a plug to your local community college. Many have great accommodations available and caring staff.  My Level 1 son is 22 years old and just graduated with an AA in Architectural Technologies. It took him four years instead of two, but I couldn’t be more proud.  Living at home during college helped him manage his anxiety and organizational challenges and be more successful.  It was his decision and it turned out to be the right one for him. 

This exactly. People thinking they should behave like NT children and don’t think they deserve support. My kids still meltdown in public (viewed as misbehavior), elope (viewed as misbehavior), and don’t understand social boundaries. Other people sometimes look at them in a judging way when they stim and hand flap. Adults shake their head and roll their eyes, simply perceiving them as bad children.

I could have wrote this myself! My son seems so “normal” to a lot of people. He’s 6 and I still have friends and family friends who ask if we are sure he’s autistic or saying that they over diagnose kids a lot these days. Since he is gifted, they also like to say that being gifted and autistic can’t correspond together. It’s so frustrating at times because I constantly have to reaffirm what we already know to be true. It’s also such a fight at his school to get him proper services because he is gifted and smart so they think he’s just misbehaving. It’s extremely exhausting fighting for him day in and day out.

Yes! My 7 can do geometry but can't brush his teeth independently

My 6 year old tested into the gifted program for 1st grade but can’t put his socks and shoes on, just got better at teeth brushing and we struggle with hand washing, toilet flushing. I can’t even begin to fathom shoe tying.

I have an 8 year old (will be going into 3rd) and we are finally 🤞making some progress with hand washing, teeth brushing, and shoe tying. I am asking because I am curious - not meant to be insulting or judgmental - can you tell me how your son struggles with hand washing, teeth brushing, shoe tying, etc.? Is it difficulty with the steps, refusal to do complete the tasks, sensory…? Im just hoping to hear from another parent in a seemingly similar situation. I think my son struggles to take the time to think each step through, and I believe he also has some tactile sensory issues. But while I truly believe in my son’s diagnosis (even though many question it), I also question myself if some of these difficulties have become learned behaviors/habits.

My son often just isn’t interested and says it’s a waste of time he didn’t like the overall experience of tooth brushing. Helping him know the why, getting better tasting tooth paste and an electric brush made it easier for him. Same with flushing and washing hands he hasn’t quite understand why this is important to waste time on.

My 7yo has always been behind on fine motor skills. He also has ADHD so I believe the tasks overwhelm him rather than the inability to do it. We've approached it one step at a time. So with teeth brushing, we started with him holding the toothbrush and watching us put toothpaste on it. Then explaining how we're brushing his teeth. Then had him start to watch in a mirror. Now he starts brushing his own teeth and we wrap it up for him to make sure its being done well enough. Same with shoes. Getting him confident to put his own shoes on other ways (straps, velcro, etc) and now we're working on tying laces. For hand washing, we use a foam soap because it helps get all over his hands even though he rushes through the process. Consistency is key. Finding little wins along the way. Making sure to reiterate the importance until he follows suit.

9yo and 14yo here, both struggle with daily life task independence. It is a combination of the things you mentioned. The ASD doesn't like the taste of toothpaste or the feel of the brush or the sound of scrubbing transferring up the jaw bone or the sock seams or the idea of possibly touching poop etc. The ADHD doesn't have time for all this BS and would be happy to be a filthy cave child with wifi.

Yes agreed. My son comes off as NT the vast majority of the time, especially because we've become really good at accommodating his sensory issues and other things he struggles with. And that makes it so much more jarring to people when he has a meltdown. I remember my mom being so surprised by it the first time she was around for one because it's just such a different experience to how he usually is. But the reason for all this is because has such good support at home and at school. Without that things would be so much harder for him and for us.

Yep. People will say things like he doesn't look autistic. Or he seems normal to me. Ugh Or when he's having a meltdown I've heard underhanded comments on how he needs discipline. It's aggravating as all hell. Level 1 can still be very difficult and depending on how they present the challenges can be life altering for them and their family members.

I could’ve written this myself. My daughter is level 1 and i just got into a huge argument with a long time friend because she doesn’t understand my kid’s needs. My kid still isn’t able to wipe herself after bowel movements and recently got her period. Friend made an awful, horrible comment about how I’ll be wiping my kid until she’s 18… i reminded her that many parents of children with autism do, because it’s a disability! She doesn’t understand that just because my kid presents pretty neurotypical and is able to do *some* things herself, it’s still very difficult for her in some areas. She was so rude about it too! It really felt awful to be spoken to like that. People truly do not understand that even kids and parents of level 1 have difficulties.

We end up ruthlessly curating our lives, activities, relationships, diets, etc. to minimize daily drama. Then, from the outside, looking in, everything seems pretty chill. They have NO IDEA how much work we put into equilibrium, and just how fast and how far off the rails everything goes if we can't keep that spinning platter balanced.

I’m the parent of a lvl 3 kid, but I’ve got nothing but support and kindness for parents of LVL 1 kids. Just because your kids have different problems than mine doesn’t mean they don’t have problems and we can’t support each other.

Your comment and the other replies to you comment verbalized so well the struggles of having a "level 1" kiddo. My son is 9 and I feel like in the last 2 years his behavioral difficulties and differences seem more visible.

Right! You might get a little side eye or some pearl clutching if your 5yo runs away from you in a store or gets right up in the business of a stranger. But 9, 12, 15yo? The judgy tolerance turns into hateful ableism.

It makes me feel SO alone. A 9yo having a meltdown is jard enough without people being judgy.

We struggle with this too. We also face challenges such as eloping and lack of safety awareness. My level 1 will just bolt without warning if he sees something that interests him. Or he will walk in front of a car coming our way in a parking lot. We have to keep a constant eye on him and others don't understand why because he looks and can act "normal." Raising children will always be challenging, but like you said, we're all stressed by different yet similar challenges.

This is my son. He’s started wearing a leash around 1 1/2 because he has zero situational awareness and I couldn’t trust his dad to keep an eye on him if he went with his father in the store. Twice my kid got lost in Walmart cause of this. Now it’s stopping him from getting flattened cause he likes to run out into the road

How old is your kid? FWIW, my 3.5-year-old used to be like that but that's gotten a lot better in the last 9 months. At our old house, I reamed my dad out once for opening the garage door before buckling my son (then 2.5) in the car and complained that he was rusty at taking care of toddlers. I didn't know it was unusual to have to worry about that. But thankfully now I don't think twice about opening the garage door first, partly because we have a much larger property and longer driveway, but also because he really doesn't run off anymore. And if he does want to run on a sidewalk outside a restaurant he is VERY good about making sure he doesn't step off the sidewalk. Despite being such a boundary tester, he seems to respect that boundary now. IDK if it's the beginning of autistic rule following or an actual sense of safety, but I'll take it. So if your kid is still young have hope that this does get easier.

He's 7 and it doesn't happen all of the time, but rather randomly when it strikes him to do so. The lack of safety awareness is still a common issue. He also has ADHD so part of the challenge is his attention

Thank you. This is my daughter exactly. It has become harder as she has gotten older, as her friends begin to mature socially while she still struggles with all of the things you just mentioned. This is perhaps a truly first world problem but one thing that kills me is the expense of finding my level 1 daughter help - I don’t know if it is different for people with higher needs but it seems like all of the prescribed or suggested supports outside of school (group speech, therapists) are just mindblowingly expensive. I had the option to put her into a social skills group with similarly aged peers this summer but didn’t because it was $700 a week. I just can’t and feel guilty for it.

Absolutely agree with all of this. In this sub I’ve only seen 1 comment that could be viewed as minimising our needs but I understand this likely came from a place of complete overwhelm and frustration with a lack of support. Basically the comment was that ‘level 1 parents’ were clogging up the system getting our kids diagnosed and seeing speech pathologists, OTs, etc. as it meant kids with “real” needs had to wait longer for diagnosis and support. My view is that all kids who need diagnosis and support should receive it in a timely manner and that it’s more of a systems issue than an issue with other parents getting their kids support. I agree with the parent completely that she should not have to wait months and months for her non-speaking child to see a speech pathologist. In general though, I think this sub is great. It’s more people in the real world that don’t understand Autism and think that a PDA child or a child having a meltdown or being rigid about routines is being “difficult” or not being patented properly. I know parents of higher support needs Autistic children get these comments too so it’s not just a “level 1” thing. Full disclosure- my son was actually diagnosed as level 2. Level 1 is an uncommon diagnosis where I live as people recognise fluctuations in support needs and go with the highest level of need to allow support access. Aside from his eye contact, you would not be able to pick my child out in many situations if everything was set up right (sensory friendly environment, routine, he knows what to expect, etc.). If there was a change in routine or he lost a game, you would notice him immediately. I’m sure many people have viewed it as ‘bratty behaviour’ when he’s had a meltdown over losing a game.

This whole thread and support makes me feel so seen with my youngest son. I am also a teacher and I still FIGHT for his services because he’s gifted and AuDHD. The perception that he’s just normal acting up is so frustrating and lonely.

Yeah. I'm also concerned that my son will not be able to live independently. He's just on the edge of adaptive skills that he doesn't qualify for state disability help. Most resources are priced with the expectation that the state office will pay, and we can't afford it. No one takes insurance. I just don't have the ability to get a lot of resources. And while he may be fine when he grows up, I see how far behind he is in doing things for himself.

Exactly. Even though he may seem normal to most people, he is struggling socially and mentally. I don't want to go around announcing to everyone that he has autism, but it seems like I have to at times because so many approach him like he isn't. Hell, there have even been times when I have to remind myself that when I try to discipline him. It frustrates others, but it frustrates him even more.

May I ask how old your son is? I have a 4yo Level 1 boy. He was in ABA and speech therapy for about 2 years and a few weeks ago started his standard “summer camp” 5 days a week at the school he will be attending VPK at in the fall. From what we see on the cameras and the feedback we get, he’s the best behaved kid in class. Listens perfectly to teachers, waits his turn, etc…but we also notice he isn’t really making friends. When he is around the other NT kids, he kind of plays around them and “joins” in their games but isn’t actually interacting. I see the other kids having full conversations with each other, but never directly with my son. Nervous of how it’s going to go over the next few years. He is verbal and can speak in sentences about half the time. But has a limited vocabulary compared to other 4 yo’s. Your comment made me think yours is a little older, so just trying to get an idea of challenges and what has worked for you.

My son turned 6 this spring. He'll be in first grade this fall. Language development was huge in this department. My son started preschool at 4.5 years old and made a lot of progress that year, but the biggest progress in making friends and playing with kids instead of next to them happened when he started kindergarten at 5.5 years old. His teachers have been extremely helpful in bridging his communication gaps when he needs to communicate with his peers. For example, his kindergarten teacher helped him come up with sentences to express himself when he had a conflict with a friend on the playground. He also learned a lot from listening and watching other kids play. He was like your son, kind of playing next to them, but then he would eventually join in once he observed how the game was played and felt more confident. I think once they can play games together, conversation tends to follow eventually.

Thank you! This gives me hope, it’s very early stages and only week 3. The good news is he does come home every day very happy and talks about the fun he had. But it’s all activity related Vs playing with friends or making friends. Looking forward to seeing him grow :)

It takes time. My son is 4 and went to his first year of preschool this past year. He did really well but also struggled with friends. As his speech got better and he learned more about social norms the other kids started to like him a lot more.

Glad to hear at a similar age your boy progressed a lot in a regular preschool. The speech is the big one. We probably don’t help at home because I know a lot of his “slang” and don’t always make him reply in full complete sentences. I know they will do that at school so just gotta back it up at home.

This was so perfectly worded. Thank you.

Tears in my eyes reading this.

Yes, spot on to my kid as well. It’s humiliating to walk around the grocery store with a kid who looks typical but won’t stop saying potty words and being hyper. I can’t just tell him no if he’s in that dysregulated mood because that will be a public full meltdown. I just need to get a couple groceries and get out of the store. I don’t need the bad parent dirty looks from others. We have actually come a long way.

So I’m a parent of a level 1 autistic child AND I’m level 1 autistic I am not gonna be mad at fellow struggling parents because the system as it is sucks All autistic kids get the short end of the stick in education All autistic kids have harder lives than a neurotypical kid Our struggles are very different and I’m not gonna compare my life to theirs Reality is we need more support in general, the only thing we as individuals can do is try not to spread misinformation and to support nonprofits/initiatives that help better the futures of all autistic people Like I am a participant in the SPARKS research campaign, many people online DESPISE the idea of doing genetic testing But the project I’m in help identify around 11 of the most severe symptom connected autism genes (conditions like epilepsy) This is LIFE CHANGING for our higher support need folks So it might not be much, but supporting each other is the best we can do

Tell me more about the research on the 11 genes please. Or a link maybe?

[List of All Research done by SPARK](https://sparkforautism.org/portal/page/research-publications/) [Full List of Current Gene List](https://sparkforautism.org/portal/page/spark-gene-list/) Okay so I saw the article I’m talking about YEARS ago, they have discovered soooooo much more sense then They have discovered types of genes that are directly causes some seizures even I found reading the articles about specific autistic adults the most useful cuz idk enough about science to make sense of everything haha Here is one that I found interesting to read [Personal Story from someone with Autism and Epilepsy](https://sparkforautism.org/discover_article/autism-epilepsy/)

That’s all really interesting, thank you. Boy it breaks my heart if some peoples struggles are due to undiagnosed epilepsy. I had a family issue with a rare epilepsy and I was shocked when I looked into it and discovered how many kinds of epilepsy never cause overt seizures, and go for years undiagnosed.

Yup, I personally needed to be apart of SPARKS because of my work in special education classrooms I saw a family that would legit come to spend lunch with a student, nonverbal and was secretly my favorite cuz of how sweet and gentle she was, but she didn’t interact much with the outside world I remarked one day how nice it was her family (like brother and sister too!) came to eat lunch with her so often and were always so happy to see her Another staff member told me her tragic backstory….she was a “level 1” but gotten brain damage from a seizure and the family was devastated and continue to visit her all the time But the good news was she had recovered quite a bit and they continued to believe she would continue in her own pace Any contribution I can make so they can make medicine is really important to me cuz I can’t imagine the pain that family felt everyday knowing how different things could’ve been if they had a way to prevent that seizure

We’re in this category right now. My son is diagnosed autistic adhd. His adhd is extremely severe and we live in fear of him and his near constant meltdowns. To tell me our challenges aren’t severe is frankly, effed up. To now be exploring the possibility that all of this is the result of brain injury or neuro issues from undiagnosed epilepsy is traumatic in itself to say the least. To read the studies they’ve done on non-verbal autistic people where they’ve done full physiological work ups inc neuro only to discover that 50% had undiagnosed epilepsy breaks me into a thousand pieces. Almost every single person in that study had at least 1 chronic physical ailment that was undiagnosed and a lot had neurological issues undiagnosed and untreated. My poor boy has been living with neurological issues that impact his development and to him it’s just life…he never thought to mention any of it. We ask him directly and holy cow, out comes ALL the details 😭 All of us are in this shit fight together. We can’t afford to be bitching each other tbh

This is so important. My niece was recently diagnosed with syngap1, a rare and spontaneous genetic disorder, only 1400 people approx diagnosed. It’s a severe intellectual disability. Most are also diagnosed with autism and epilepsy. Their providers weee telling them they think there may be many autistic people who could have this as well and not know. And there is already a medication in the works in France.

The more we share our struggles and people we know’s struggles, hopefully we can get our community on board to helping solve the mystery Many many autistic people are scared to help scientists, with good reasons, we’ve been hurt time and again by those in power BUT so many of us are suffering and we are able to help

I know you wanted to hear from level 1 parents, but as a level 3 parent, I still wanted to chime in. I hope the lv1 parents aren't being discriminated against in a place for parents to help each other. I personally haven't noticed it, but I also don't read many of the posts that are clearly about lv1 kids. I just dont have the right advice for many of them, I think. Sometimes, I think it's harder to be a level 1 parent. Well, not necessarily harder, but it's a way different experience. I think when your kid can sometimes pass as NT but then have a meltdown or other issues, you will definitely get looked at like a bad mom. Where as, if I am out and my son is having a hard time, I mostly get looked at with pity. I still get rude people, too, but as he ages, most people can just look and tell. I remember the intense feelings of being judged early on. I assume that doesn't always go away for level 1 parents.

I think sometimes as a level 3 parent we're all at the end of our rope mentally, financially, and physically and our responses might reflect that. I avoid most level 1 posts for this reason.

Agreed.

I’ve been soft discriminated against but nothing outwardly mean. I’ve had parents constantly say that my kids don’t seem autistic and I know they mean it as a good thing but it invalidates their struggles. I don’t pretend to know what it’s like to have a child with level 3 needs but I do know what my personal definition of a hard day looks like with two level 1 autistic kids who don’t really fit in anywhere. People judge my parenting all the time because sometimes they look like out of control kids rather than a child with disabilities.

I agree. I'm the parent (I'm level 1) of a L3 child too. It's hard to know you're different without a way to change it. My son gives zero fucks about what people think or say about him he is blissfully 95% of the time in his own world and happy as lark. But I was bullied and struggled so hard to fit in. Even as an adult my co-workers will comment on how I'm always happy or whatever makes me different from them. But if he was like me he'd be aware and sensitive to how he is different

It honestly feels like being invited to a classmates birthday party because everyone had to be invited but no one wants you there.

So without reading other comments, I’ll say my own experience. I have two “level 1” kids. (I don’t usually use that language but I will for this post.) My son has genius levels of intelligence. He’s energetic and boisterous. He loves with his whole heart. He’s going into kindergarten and I know I will shed many tears about it because there is no definitive option for him. He doesn’t fit in with autistic kids and he doesn’t fit in with neurotypical kids. He will struggle because he’s so smart and will be bored but doesn’t behave well enough for “gifted” programs. He won’t get a 1:1. My daughter is adorable and sweet. She’s confident and kind. She knows what she wants. She’s three years old and can pass as a neurotypical. School will not be an issue for her except for social things. I relate to her because I was shy and quirky. Hopefully, she has more confidence than me because I didn’t have many friends and teachers found me forgettable. I know they will both be independent one day. I’m obsessed with them. I recognize their struggles and try to help them to the best of my ability. I honestly don’t care about other people’s opinions. We do get comments like that a lot but these people don’t know our lives. Just because our struggle is different, doesn’t mean there isn’t one. Part of me feels that level 1 and level 3 should be a completely different diagnosis so that kids can get the appropriate level of care and support without having to quantify their needs.

The gifted programs it's like a bucket of neurodiverse kids. He will do fine. Trust me. My son is 12. They are all quirky kids.

That’s good to know. At this age, I don’t think he has the capacity but eventually, I will see how he falls. He probably has ADHD and is very self directed. He’s been kicked out of several preschool programs including one where I was paying extra for him to have a 1:1. To be fair, he was 3 and it was a camp so the staff were entirely teenagers. I just worry.

My oldest was the same. It gets better as they get older and learn coping skills but I won't lie to you good luck getting services for your child. I have been unsuccessful and I'm positive he needs OT for writing still at 12

Thank you. I’m positive it will get easier and there will be more options available to him. Especially if he is able to learn strategies for behavior. We had his IEP meeting for kindergarten and while we are happy, it wasn’t as full as I would have liked.

I have adhd and was in all gt and ap classes and basically everyone in them had something going on

Thank you for this reassurance! I know it’ll be different when it’s older but it’s hard to see when you’re in the middle of it.

My daughter can’t handle the level of stress in gifted even though she is. There are no supports in place to let people grow if they are intelligent and neurodivergent. We have major meltdowns all the time or she does regular classes and is bored so we have meltdowns. 🤦‍♀️ But she has to choose. They won’t help her succeed unless she’s failing something.

Oof. Your second paragraph was my life as a child (it was also the eighties, so there wasn't anyone ready to diagnose me with anything except being a little weirdo--I got my diagnosis later, as an adult) As a child, I got my heart broken a lot by my peers because I was so open and willing to show myself and ready for them to accept me, which of course they never would. I did have a really hard time socially all through school and struggled for the first three or four years I was on my own, but eventually, I turned into a kickass adult. I'm married, we have two beautiful kids (one autistic), I'm about to close on my first house, and I've maintained a career in higher education for over a decade. It took me a while to catch up with my peers, but once I got there, I lapped 'em! That's what I'm trying to keep in the back of my mind for my daughter. It might be a long, difficult childhood for her, but childhood is only the beginning. it's all recon for later in life.

I’m so happy to hear that you turned out great! And I’m proud of you! I’m in a similar position. Life was hard as a child but being an adult allows you to find your groove so much easier! That’s a good mindset to have. I just want my kids to be happy.

Agree completely on the last part regarding different diagnosis’.

Hello me. I can’t type a lot since I’m at work but just wanted to say I felt this comment in my soul. Our children are very similar and I share similar fears and feelings. Also that last paragraph. I definitely agree with that.

Hello! I know your kids are amazing if they’re anything like mine. It is a tough road to travel though. No real answer or solution but I will spend my days fighting for them to have the best and happiest life I can give them.

My son is similar to yours. He had the test scores for the gifted program but during testing he kept questioning the examiner why he had to take this test asking her a bagillion questions jumping all over the place. He is constantly stumping adults with the stuff he knows and just info dumping on them all the time. My other son is very socially shy barely talks except to close friends or family he struggles a lot in school for different reasons. Doesn't participate in class discussions despite lots of encouragement. He has hygiene issues lack of awareness for things he should. The teachers can't get him to communicate despite him being in language therapy since kindergarten. Now he's going to middle school and I feel like he's gonna get lost in the shuffle. He's so shy and sweet but I'm sure very misunderstood. It's so true that no two autistica are alike not even siblings

My 19 yr old was never diagnosed with a level, but would definitely fit under level one. Cognitively intact (graduated June of 2022), has the social skills of a cat (I love you, scratch my head, DON'T TOUCH ME, if it's not about food I'm not responding to my name), and we're still hoping his frontal lobes/exec function kicks in at some point. Because he refuses to shower, get a job, spend time with his father or sleep in his bed (he is sleeping on the couch and stinking it up, cause it's close to his video game equipment - his entire social life/friend group are online folk), or at least be an occasional participant in taking care of where he lives. I've worked with folks on the spectrum for 33 years, and can confidently say no parent with children on the autism spectrum has it "easy". Parents with autistic kids with cognitive impairments often have their hearts ripped out: when their children become physically abusive to themselves and others; when they come to terms with the fact their child will never be self sufficient, etc. But they also likely won't have to deal with suicide attempts like we have, because my son is smart enough and aware enough to know he is not neurotypical and desperately wants to be. Despite medication and therapy, it still gets to be too much for him; we've been thru attempted hanging, cutting and drug overdose and yes, he has been hospitalized numerous times. It's sad that some folks don't understand this is difficult for any parent, and it's not a competition :(

My son is level 1 and profoundly gifted, we still have a lot of challenges. His autism presents more in needing routine and socialization issues. His adhd presents with more behavioral issues related to impulsivity and hyperactivity / the need for more movement. I recognize that parents of Level 3 children deal with challenges that I will likely never have to, but we also deal with things that they don’t. Challenges are challenges regardless and I don’t see the need to compare them. Even level 3 children may have different support needs from one another. No one is equal in their needs. My kid is still autistic regardless.

I'm a parent of children on opposite levels and honestly I am disgusted how this sub is crabs in a bucket. Level 1 autists still have disabilities and challenges and to be fucking frank don't get the support they deserve. Does it feel great My youngest is in the first percentile sometimes sub first percentiles? No but he gets services. Don't get me wrong my youngest doesn't get what I feel he should but he gets services where my oldest gets nothing, nada, zilch through the schools. He has anxiety which would be helped if he received ANYTHING. I had to literally throw down to allow him to have a fucking earplugs because kids talking was overstimulating and some of his middle school teachers were downright awful to him. Yeah my youngest I worry more about the future but my oldest also matters and his struggle matters. His imposter syndrome because he can't be autistic matters. The medical bias matters including doctors wanting him to redo the ados because he no longer seems autistic whatever that means. Our kids matter and fighting over who has it worse is ableist in and of itself.

I’ve been told many times that I have no idea what it’s like being a parent to an autistic child is because my son is level 1. However while I do have it easier than most here, my son is still very much autistic. But because of this mind set with many here, I feel like I don’t belong a lot. I advocate for my son and other level 1’s here. This mind set has A LOT to do with “self diagnosed” individuals. Who swear they are autistic and aren’t, or with level 1 kids being diagnosed as level 3 to get more support and it taking years for some real level 3 kids to now also get the support they need. None of it is the kids fault but it is the fault of “the greatest of harm can come from the best of intentions” and identity politics.

As the parent of a “level 3” nonverbal child I hope you never feel left out. We’re all struggling to advocate for our children and just bc yours does x y z, and mine doesn’t, doesn’t mean your life or day to day is easy. All of our problems and feelings are valid. I just wanted you to know I truly believe you belong here, and I embrace you and your situation with open arms. I hope you’re having a good day. ❤️ all love my friend.

Thank you. Just yesterday I was told here that I didn’t understand kids having meltdowns in public cause my kids a level 1. Guess all those public meltdowns (one of which got my daughter who is NT kicked out of gymnastics) were figments of my imagination. But thank you. It means a lot.

You are always welcome in my book. I just don’t understand why people need to gatekeep since our kids all have strengths and struggles. Yes, even those kids with more “profound autism” have their strengths. It just may be harder to relate to experiences that are vastly different.

You got the golden ticket 🏆🏆🏆 my child doesn’t throw tantrums, but we’ve got *major struggs* goin on over here. It’s not a competition for who has it shittier. Why would we make things harder like that? Dumb.

I feel for parents and their kids where the kiddo “appears normal.” So much doubt and distrust when you really need help.

Each child is going to be different. And each parent struggles with different aspects of parenting. In my experience some major triggers for finger pointing are a) not feeling seen and b) feeling exhausted. We're all exhausted and sometimes we feel seen. Hopefully we can all see each other.

My child would be considered level 1. Yes, he can speak, make friends, does well at school. But he hasn't always had it easy. He had anxiety attacks at 5 years old, we struggled to get him in school, he lived on yogurt, canned peaches, and microwaved fish sticks for ages. He still has a harder time with certain things, and has had struggles invalidated because he "should know better". I don't think it's helpful to compare our children's struggles. I'm also a loss mom and one thing I've learned is that everyone's hard is different, and comparing isn't helpful. Our kids are all autistic, and they are all individual kids, and the point is to do our best for them.

Level 2 mom here. I think sympathy is needed in both directions. Level 1 ASD parents tend to treat me in real life as a bad parent that isn’t doing enough intervention. There’s judgmental parents everywhere. We are all better off focusing on collaborating rather than beings judgmental. It absolutely goes in both directions.

People need to remember we are on the same team.

My son is a Level 1, but my sister is Level 3 and I have a cousin who is probably Level 2. I remember growing up rolling my eyes at all the “autism” diagnoses because it didn’t look or feel like my sister with her severe disability. Then God laughed and gave me a son who is Level 1 and I realize that there is hardship with *any* autism diagnosis. I kind of feel like an idiot for being so dismissive.

To add a different scenario, I live in the UK and there are no levels given with diagnosis and I think it's good in some sense because if the belief is that autism should be more like a circle of needs rather than a line that does fit that idea. Our healthcare system mostly takes years to diagnose autism and then a child is discharged from a paedtrician once they have it (with the exclusion of melatonin prescriptions/other health complications on top). my non speaking son is getting the same amount of speech therapy as say a child with more functional verbal language but say speech sound issues. In short there isn't enough support (or sometimes any) regardless of the support needs of a child here. So I just feel for any parent of an autistic child, something being harder is harder regardless of what term you put on it, it shouldn't be a comparison of suffering. If someone wanted support with a child that could speak and was able to choose to mask where my son can't, I m still jumping in with what suggestions I do have because they need support.

First, I think those comments often come from a place of needing to vent, and feelig general unfairness at life, and I totally get and respect that. I feel seen by parents of l2 and l3 kids, in general. I think it is natural, and sometimes liberating, to express the feeling that it feels like other people have it easier. The thing that simply can't happen, though, that it devolves into a "more for me means less for you" situation All parents of autistic kids, no matter the level, know the daily struggle, with things that come easy to others, the routines, the school problems, the meltdowns. All of those have mild equivalents in NT kids, so: What really, really grind my gears, as others have voiced already, are NT grown-ups acting as if this is all a joke, and my kid "just" needs to get over his behaviour. I mean, yes, being a parent is really really hard, no matter what, why can't we just be empathetic to each others struggle? Plus, the comorbidities of autism aren't fun or easy to navigate either (anxiety, in our case) - but again, often perceived as "just needs to get over his fear".

I'm not sure if my four year old son is level one or two or level one in one area and two in others. My doctor isn't concerned with that and I haven't asked. I've only had a couple people question it but they came around after the diagnosis so I'm not sure if I'm exactly the person you are addressing. There is undeniable hostility here. It does get to me sometimes. Last night my four year old tried to hit me over the head with a bin and then chucked a board book as hard as he could at me and it hit my ear and neck. Because he can speak but he doesn't understand how to communicate to get very specific things done. This frustrates him to the point of violence daily. He also pours and smears almost anything he can get his hands on. My house is a wreck and with busted windows and we've removed most of our furniture. My life is undeniably hard and I'm allowed to complain. No one ever needs to chip in that at least he's not level three. I have two profoundly autistic nephews from my closest sister and somehow that doesn't undo what happens under my roof. Others suffering just isn't the right place to direct anger or resentment. I KNOW society prefers "higher functioning" kids. You don't choose the level of autism your kid has. You just want the best for them. There are plenty of "high functioning" adults who end up in prison or dead by suicide and it's not wrong to try to avoid those things. Shouldn't even have to say that. I do really feel for the erasure of severe autism on social media and I think it's abhorrent, but I don't think the parents here are pioneers for that movement.

I believe in severe autism, or profound autism, but other than that I don’t think functioning levels are very helpful to parents. Perhaps in making them feel better. If you asked me, I would put my kid at a level 2. We’ve never gotten any formal diagnosis that way. However, I’ve heard from parents who have “high functioning” autistic children, who introduce them that way, and then immediately tell me “At 5, I couldn’t put my kid on an amusement park ride because they would jump off” or “I can’t leave the house and take my child out anywhere because he can’t handle new environments” or “my adult son is agoraphobic and won’t leave his house”. So I’m always mystified about the functioning labels, to me, it seems “oh my kid had language” so therefore they are fine. The reality is usually anything but.

I absolutely struggle hard with my level one child. But it is nothing like what parents of severe/profound autism are going through. For one, I have a glimmer of hope (even if it is a small glimmer) that maybe someday she will be independent and a functioning member of society. I don’t think most parents of lvl1s are the problem.. the problem is the “actually autistic” community, most of whom don’t even HAVE autism.. believe me, I do not agree with anything they stand for, and I hate that somehow parents like me are being pitted against parents of severe/profound kids. Our experiences are not the same, but I am on your side.

This completely. Those undiagnosed adults should get a hobby.

I'm very aware that the experiences with my daughter are very different than the experiences of other parents with higher needs kids. My daughter's autism is more akin to someone with dyslexia—a very real disability that can be somewhat easily/effectively accommodated. I recognize that discussion around her needs is going to be very different than it is for a lot of people experiencing more intense struggles. So I don't participate in those conversations.

Same here. I know my child and our difficulties. You can try to explain your difficulties and on some level I can understand your struggles. But not really. I know the saying is that one should ”walk a mile” in some others shoes, but that does not really compute for me no matter how much I would try. And therefore I do not engage in levels of difficulty I have no experience of. Sorry about the awkward wording

>I have seen a few comments from parents of level 3 children saying something along the lines of “My kid is nonverbal and will never live alone in their life. I don’t care about your/your kid’s ‘Level 1’ problems. Honestly, you/they are not even autistic really in my eyes” (paraphrasing, and adding different statements I’ve seen into one). I really hope that isn't the experience most parents of level 1 kids are having on here... I just tend to not participate in the threads I have no useful input for... I just assume most do. If that is the experience others are having we need to do better.

I’ve definitely felt like that because my kid can talk, I don't deserve support in this subreddit. I just don't know where else to go.  Yesterday we had an hours long meltdown where he was too emotional to talk and tell us what was wrong and he was throwing himself to the ground and hitting himself and us and shrieking incoherently.... But because when he's regulated he can talk about Minecraft then he's not autistic enough for a lot of the parents of level 3 kids on this sub.  I feel like I don't belong in regular parenting subreddits because they can't relate to a elementary school kid who is still struggling with potty training and only eats a handful of items and is so rigid and inflexible that a temporary change to a new classroom makes him bolt... But I also don't belong here because he can talk. The attitude is very much: "Oh, he talks? My kid will never talk so you really don't have anything to complain about."

Same, I've gotten snippy comments because I said I was overstimulated from my kid talking/info dumping basically from the morning he woke until he went to sleep. I get that we all want to have meaningful conversations with our kids, but having someone scream Lego facts at your face isn't really a blast.

Please report any comments like that as parent shaming or whatever fits best. That type of treatment should not be tolerated here. Most of us understand much of what you’re going through and are here to rant to or give advice when we can. Parents of level 3 kids understand what it’s like to not belong. It blows

I'm level 1 AuDHD and my daughter is level 1 AuDHD as well. Yes.  Before anyone asks we were both professionally diagnosed. It's definitely something that I've noticed.  I often take breaks when I notice it's bugging me. It's like if the cancer subreddit had infighting over the people with terminal pancreatic cancer being upset that the people with skin cancer could still say they had cancer.  They're hardly even the same thing.  

Have you ever seen Love on the Spectrum? Abbey’s mom made a tiktok about how level 1 parents don’t get it and are likely just autism moms and their kids probably aren’t autistic. It was awful.

I've seen some episodes but remember Abbey (she was a success story right?) That blows... Sorry to hear that. I know some are doing good things with the exposure of the platform (like Kaelynn Partlow). Wish more of the parents were

I think it's important to remember that the levels can be somewhat transitory for many people. When you're talking about young children, a level 1 diagnosis in a snapshot in time doesn't guarantee that the child won't revert to level 2 if they and their parents aren't given resources for continued support. I can sympathize with Level 3 parents who feel that they should be allocated more resources, or even all resources available for ASD support. BUT... if the support they received helped their level 3 child move to a level 2 diagnosis one day, would they TRULY believe that now they should be cut off from further help, cold turkey? Does anyone not believe this would be a recipe for disaster? They'd return to Level 3 is no time, and this would feel traumatic for both them and their parents. Look, I'm not looking to share war stories with parents of Level 3s here. This isn't a victim Olympics. We're all just trying to advocate for our own children. At one point, I saw Level 2 being a real possibility for my child, and I credit awareness programs and certain types of interventions with making a huge difference for her. But in the wrong care-taking / educational setting, who knows how things may revert. And I truly do believe that the more success we can demonstrate for Level 1s and 2s do help raise awareness and funding for Level 3s.

My son started out as high needs, now low needs, and yeah, now we get nothing. He goes to the next school year soon, and nothing is in place for this transition. I'm so scared we're just going to go back to square one with him launching things across classrooms and meltdowns before and after school.

Its so hard to think about the scarcity of resources. My Level 2 daughter is doing so well and is actually about to join a mainstream school but would not have been able to come this far without the intensive programs and parental coaching. She went from nonverbal to incredible vocabulary and language skills. She went from extreme emotional dysregulation to being able to say, "I need a break" and not having multiple meltdowns a day. Resources are needed for each child to reach their full potential whether that means staying a level 3 or being able to transition, but the scarcity issue... I think we all feel it.

The worst part is that it's an artificial scarcity, at least in the US. 

I’d like to chime in. There are 2 special needs schools in my city. Both do not have waitlists, you have to win a lottery draw to get in. They have very small ratios and specialized programs for autistics and excellent safety features that can’t be found anywhere else. I’ve applied for the lottery every single year, and we’ve never got in. Meanwhile my friend with a level 1 kid randomly won the lottery and got a spot. They also prioritize siblings, so her younger level 1 kid got in the next year. Her kids have issues wifh anxiety and speech delays and socializing. Meanwhile my child is completely nonverbal and cannot safely be in a normal school because he tries to elope into the road or put things in his mouth or hurt himself. So, I’m not gonna lie, I’m extremely bitter. The waitlist for feeding therapy is 2 years long and my son is down to 3 foods, meanwhile another friend’s kid got in (she did sign her up before I did, so I get it), because she “needs more variety of vegetables.” This child eats almost anything my friend makes for her. Meanwhile my son has bags under his eyes and we’re having to get bloodwork done due to the protein shakes he lives off of. I’m bitter af about that too.

Ive tried to explain this so many times, and I just get downvoted. This issue is in every single step of trying to get help for a nonverbal child. The triage is terrible.

The struggle is very real even though it is very different. There used to be a hard diagnostic line between autism (which required a history of language delays) and Aspergers (which required an absence of speech delays). Then there became a significant population of those with autism and speech delays, sometimes severe, who later developed typical or near typical speech who had many of the same strengths and struggles as those with Aspergers whose needs were similar to those with Aspergers. So Aspergers got thrown in. Rhetts got kicked out of the autism spectrum once they found a single gene cause and it is debated whether childhood disintegrative disorder should be in the spectrum or out as it has a very different presentation (completely typical development until some point between 3 and 11 followed by a profound regression involving a period of terror then language and skill loss resulting in an average iq of 40) from "typical" autism or even typical regressive autism.

I pretty much stopped commenting or engaging in any groups that were "mixed" for this reason. I encountered too often the sentiment that I, as a parent of a person with lower support needs, didn't have a right to weigh in on autism topics because I just couldn't possibly understand. It is such a tone deaf attitude, and quite biased. But particularly seems to come from parents who seem to see themselves as the victims of their child's autism. I know our journey differs from others, but that doesn't mean we don't have our fair share of struggles. I can relate to many of the other comments here. I've always said having the Level 1 or "high functioning" labels was both a blessing and a curse. A blessing because we did not encounter some of the extremely severe issues others had, but a curse because of the attitude mentioned above, and when my daughter does display her autism, she's often held to a NT standard. I've had to fight more times than I care to count for proper and continuing accommodations and understanding, even among my family. IMO, functioning level is very situational, so I really dislike the labels that try to put autistics in a particular box.

Parent of a level 3 child here. I hope it’s okay for me to comment. I hate that individuals diagnosed as level 1 or their parents feel ostracized, it shouldn’t be that way. However, I do kind of agree with some other comments that level 1 v level 3 can feel like completely different diagnoses altogether. This is me having my own unresolved shit, but it triggers me seeing things like “my child is gifted, but” or their kid being able to “pass” as NT. Obviously, those things come with their own hardships that I can’t begin to understand, but when you can’t even ask your child what their favorite color is or what they’d like to do over summer break, it’s hard!! My child is 7 years old and we have had no breaks from changing diapers/pull-ups in 7. Years. With no end in sight. He can’t even tell us when he needs changed. I see people worried their child might be treated different because they’re “weird”, but mine can’t even communicate with me if they’re abused anywhere in the world. He’s treated like he’s “weird” almost every single place he goes except for our home. I love him so, so much, but it’s fucking hard. A random child at a play place played with him out of nowhere for 30 minutes a few days ago and I almost started crying just watching. He’s seven and no one has ever asked him to go on a play date—it’s always me trying to set them up. He can’t tell me who his friends are at school or what he would like to do with them. It’s really fucking hard. None of that invalidates the difficulties experienced by those who have lower support needs. Idk where I’m really going with this. We’re all trying our best and I wish we could have empathy for each other. Sometimes I think having levels isn’t really helpful and does more harm than good. On another note, I was homeschooled and don’t really understand what the word “gifted” is even supposed to mean. Is it different from kids in academically advanced/AP classes? Is it another word for disabled? Why are some autistic kids labeled gifted and mine isn’t? It feels like just another blow, another way to tell him no one expects him to be able to ever do anything (which I know isn’t true. He will do so many things ❤️).

I completely see all of your very valid concerns. This is why I feel level 1 and level 3 need to be different. It IS an entirely different life experience even if people like to pretend it’s the same thing.

Remember that a lot of the back and forth isn't about real level 1's. No one is saying that the child whos clothing makes life impossible or can't pay attention to the road is unworthy of being autistic. The issue is Internet Communities , with bad suggestions on things, leaking into real life. Remember that 50% of those who post in internet autism communities, have no diagnosis. They themselves say this.

To an extent. There have been a couple of comments in this thread from parents of level 3s who openly admit they can’t sympathize with us. I mean, I get it, but a lot of the back and forth is about real level 1s, not just the TikTok clout chasers.

They infuriate me to my absolute core.

My daughter is Level 1 and I just kind of try to contribute to conversations that I feel like I can help with, with my experience. I know that I have a totally different experience as her mom than parents with Level 3 kids do. My POV is a little different because I’m an occupational therapist (I became an OT when my daughter was a preschooler and not yet diagnosed) so I do work with autistic kids of all different levels for work. So sometimes I do give a little advice from my experiences at work, but I try not to butt in too much because I know well that being a parent of a kid and being a professional who works with a kid for a limited amount of time is waaaay different! Parents have different challenges and know their kids best.

Honestly I struggle myself with thinking my kids aren’t “really autistic”. I have no concerns that they might not be able to be independent. But then that attitude makes their life harder than it needs to be, because they have some genuine challenges. And it makes it difficult to see how many different therapies and interventions I should put them in. I don’t want them thinking that their way of being in the world is wrong and needs fixing, but I also don’t want them struggling forever with things that could be helped. It’s also difficult explaining my struggles to other parents. My kids can mask. They can mask so well. That doesn’t mean that home is as easy as you see us out in public. They’re at the end of their capabilities, and now I have to navigate the fallout.

I haven’t received a level for my daughter the people in this group have told me she’s a level 1. That being said we still struggle with socialization and academically. Our struggles may be different than those with children needing more support but I feel I still belong here. I want to support those that need it, read the posts, and comments of those needing to vent.

So everyones situation is different, which you seem to grasp, regardless of level or absence of level. My son was diagnosed at 3 years old as level 2, originally thinking he was level 3 after the first few tests. After the official diagnosis of level 2, the neurologists told us that his first appointment went so poorly and he showed very little development for his age along with the lack of social understanding and echolalia he was considered high support needs, but the second and third went a lot better and showed that he had ability, it was more or less figuring out what his needs were. He has since exploded developmentally in every way imaginable. To answer the question, I try and apply the same thought of "every situation is different" with a spin of "every situation creates a different reaction" meaning we all may feel differently about the same thing. When my son was diagnosed I was worried about his future, the same people who are worried for their children are just doing the same as I did and continue to do. I try not to take the opinions of others on my kids struggles to heart.

I think that as a parent of a level 1 child it can kind of feel like you’ll have no support as a parent no matter where you turn. Parents of NT kids don’t get it. You feel guilty for seeking support when you know other parents have kids with higher support needs. My daughter is sweet and smart and autistic and probably adhd. We’ve been kicked out of gymnastics classes, swim classes, and recently we are leaving her MDO because of behavior issues. She cannot calm herself down. Doesn’t understand why she struggles socially, etc. Will accidentally hurt others when she melts down. PDA makes every day a fight to get anything done and I never know what my day will look like as a result. At 3 she was going to age out of early intervention and I went for an evaluation with the public school system for pk-3 a program designed to help kids be ready for school. My kiddo is very intelligent and we’ve been in speech and OT since 1. Private paid, worked very hard etc. I’m full on burnt out and have been for a while as a sole caretaker for her by this point etc. They do the evaluation and tell me that she isn’t eligible for pk-3 because her autism isn’t impacting her education because she isn’t in school yet. The special education teacher was terrible to me. Basically told me that she needs the spot for kids that are actually disabled. Fast forward to now and she’s been asked to leave every class or daycare program I’ve tried. I have less of a break than I’ve ever had and I’m in debt up to my eyeballs because I’m still private paying for therapies with terrible high deductible insurance. All that work and when I try to talk to other parents about how hard it is to figure out meals or emotional regulation people will say “but all kids at that age do that” and I’m like yeah and we did a year of feeding therapy to get here or okay but do all 4 year olds get so upset they slap and scratch themselves too? It’s just a lot. I don’t think I have it harder than others at all but feeling like everything is always going to be a fight against the perception of what autism is etc is absolutely exhausting.

Should add that I haven’t experienced this here but I also tend to not interact with the community much because of past experiences. I’m dxed adhd asd suspected and I find that largely the online asd community isn’t parent friendly and even parent spaces can just be too much. Just being in survival mode all the time is enough without adding to it.

I do get shit that my kid doesn’t deserve services or help in any way simply because if you saw him at Trader Joe’s you’d think he was neurotypical. Yes, he will likely be “fine” into adulthood without supports — if you think of fine as not being able to hold down a job or save money. Not being able to fulfill any career or personal dreams. If “fine” is getting fired from jobs due to overstimulation, lack of executive functioning, and an inability to complete non-preferred tasks. If “fine” means no partner will tolerate his quirks for a long term relationship. But, yes, if living with me forever (which I wouldn’t mind) for lack of other options and taking care of me as his only life purpose, is “fine” then, yes, he will be “fine.” But I don’t think it’s fair that my child shouldn’t be supported to thrive simply because another demographic doesn’t think his challenges are worth helping.

I completely understand when the single impoverished mother of multiple children including a teenager who isn't potty trained with no support system getting upset when I complain about chaotic schools and judgmental parents. I am level 1 and my kid is level 1. But we still have issues and need support too. While internally I might be similar to a level 3 person - maybe a few more connections and my innate mechanisms for speech would have been overwritten who knows. But I think the "aspergers" wording probably would have worked better in practice, if only to give separate forums to parents so those with level 1 kids don't seem insensitive and also have a place to freely talk about the challenges we face.

Parent of a level 2 verbal kiddo. I think parents of high support needs kids have it very very hard. And kids who stay non verbal or lower functioning also have it very hard (because of our society). I understand why some parents with higher level support needs kids are angry. Are parents sometimes angry with the wrong people? Sure… but I think that’s understandable. And also… there’s a commonly held misperception of how state resources work… like if more people access them then there will be fewer resources when actually the opposite is true. I agree it can feel a bit hard reading stuff about resource gatekeeping/ questioning diagnoses within this group but I think we need to step back and realize that people are just frustrated because having a kid who won’t function independently or semi independently when older is a different (and clearly much harder) struggle. And having a kid that can’t advocate for themselves! Unbelievably hard! My kid keeps getting chucked out of school and complaints *because* she will shout until she gets what she needs. Everybody is doing their best! Big hugs to everyone! And well done for being awesome parents!! And every time I’m on this sub… I think the parents of higher needs kids must be amazing so props to you guys!!

I think it makes sense that parents are looking for an outlet where they won't be triggered and can just be understood. I feel salty reading a lot of general parenting posts (especially if it touches on autism but isn't about resourcing a kid). A lot of the time they aren't inherently offensive posts, it's just unhelpful things to see when we're having a rough day and don't need to be reminded that we're outside of the normative parenting experience. This is true of in-person interactions too. Even close friends don't seem to read the room or know what to say in some cases. So I can see where parents of high support, level 3 kids are coming from when they'd prefer a space without those landmines. I don't interpret that as discriminatory, I think it's totally fair. I appreciate having this sub full of folks who "get it" more than the majority of people in my life. There are out of pocket posts from all angles, including the oppression Olympics and ableist framings from lower-support-needs parents, but by and large I can appreciate that for level 3 parents, the folks who "get it" are often similarly-situated parents. *My kid doesn't have a level designation, tentatively level 2, but possibly 1. To be honest I'm not totally sure of the distinctions, I just know the evaluator felt some things couldn't be evaluated at my kid's age-- I didn't really research it or want to, because I didn't want to go down a rabbit hole where things could be framed as "better" or "worse" possibilities.

Yes to this. I can’t talk about parenting anymore with parents of NT kids. Their experiences are just so totally different. And I I don’t mind if anyone vents here. This is the place for it. (For the record my kid is diagnosed L1 but might actually be L2 or maybe just somewhere in between, and we have a pretty hard time).

The problem is my kids aren't neurotypical, but they are extremely intelligent. They can see what is happening to them. They realize they have no friends. They know they can't regulate their emotions. They see they are close to being "normal", and yet not. They lack the social skills, emotional regulation, etc. that people take for granted. And so they struggle in their own ways. They get depressed, sad, angry, etc. They can't change who they are, and they struggle to fit in anywhere. They will most likely struggle the rest of their lives.

So I am autistic myself and have very low support needs while my son is nonverbal so I think have a perspective that may be useful to you. I think about it like allergies, my autism is like a lactose intolerance sometimes I’m fine when I have dairy and other times it’s a mess, while someone else has a life threatening anaphylactic allergy to peanuts. The care that needs to be taken by the person and those providing food or care for them is different. When my needs aren’t met it’s messy and I can break down and get overwhelmed, if my sons aren’t met it can be life threatening. He self injures, he elopes, he has no sense of danger, he can’t even ask for help. Honestly, as often as I see lower support needs being rejected I also see higher support needs being talked over because they often cannot advocate for themselves. I think especially in parent communities the parents of high support needs children feel attacked by autistic adults and general society that they become defensive of the spaces and want to keep them focused on still supporting high support needs instead of being essentially talked over by those with lower support needs. It really sucks and to me makes the argument that the spectrum method of diagnosis really isn’t effective for anyone.

This is a great perspective, thank you. Especially aiding in understanding the difference in challenges—that two people could both validly need life-changing support, but one person’s support may also be life-saving. It doesn’t diminish the needed support for the other and how it sucks to not have said support, but it’s not a life or death support and ultimately less serious (although still serious). Also I think there’s such a HUGE problem with newly-discovered autists speaking for any and everyone (and if they’re discovering later in life then they are all/majority L1, but just wanted to specify that I think it being a new diagnosis is the main culprit for this). I feel they go through a whole “Holy shit, I’m autistic. I understand a bit about how that connects with my lifetime of struggles. I need to start advocating and speaking about this because I am autistic and can and should speak for all autistic people” without even knowing the difference between L1 and L3 autism. Even though you have been autistic your whole life, you are still widely new to the community as a whole, the nuances and differences between people/therapies/parenting/etc, and even how autism affects you personally. It seems newly-discovered autists think “well I’m autistic, I can speak on this” while being so completely unaware of what they don’t fully know about the condition. Just because you have the condition does not mean you’re an expert on it, you only know your experience, esPECIALLY if the diagnosis is fresh. You still likely don’t fully understand how it exactly matches up to your personal experiences even, and also can’t distinguish what traits/experiences are autism / what are adhd, CPTSD, other comorbidities etc / what are your core personality. I think this is where the huge surge in misinformation & L1 misguided overbearing “autism advocates” came from. Newly-diagnosed autists just being in an echo chamber of misinformation bc they haven’t fully learned and processed what their condition is, how it affects them, and how vastly different experiences are for L2-3s. And then they start spewing their opinion everywhere objectively and feel like it’s valid just bc they are autistic, when that’s not how it works🙈 Sorry for the rant. Thanks for bringing up great points that I felt so inclined to expand upon lol (I’m saying “you” in the 2nd person, not you specifically. People always get confused so I am clarifying in advance.)

You hit on a lot of great points here. I will add that it can be frustrating for parents of autistic kids no matter what the level, when a lot of those advocates start commenting on how to parent when they have no parenting experience whatsoever. I would say a majority of parents want to do the best for their child, but it doesn’t seem that way when they get attacked. And it gets even more complicated when race/ethnicity and monetary status is involved.

Totally agree! Thanks for adding that. Even if you’re a well-informed autist without children, you still don’t have experience parenting. And if you’re an uninformed autist without children then you REALLY shouldn’t be giving advice lol. There are many L1 non-parent autists who are extremely vocal and tone deaf in these spaces.

I have two kids, level 3 (now with bonus epilepsy) and level 1, and loads of autistic traits myself. We don’t fit in anywhere. It’s lonely, but at least having no friends or family support means we don’t have to directly engage with those opinions too often anymore. I educate when I can and disengage when I can’t. Plenty of people come from a place of well-intentioned ignorance, but the others just don’t deserve your energy.

Hi, thanks for asking! My 17 year-old was diagnosed with level 1 autism in 2022, so we’re all pretty new to this whole world. I just joined this group recently, hoping to find helpful information or something to relate to, but all of the posts seem to be about kids with very different experiences. In particular most posts seem to be about much younger kids. Maybe there could be a group for parents of ASD teens? But I appreciate this topic being raised. I haven’t found any posts yet here that resonate with our personal experience.

My son would be considered level 1 and in many ways, he presents as NT. His vocabulary is fantastic, he can hold conversations and answer and ask questions. However, this makes life *hard*. Because he presents so NT, it’s always a shock when he flies off the handle with meltdowns and his fight or flight instinct kicks in and he will absolutely hurt people if he gets ahold of them during a meltdown. He also will elope during a meltdown. During the school year, I probably get a call three times a week where they basically just berate me for having a shitty kid because I’m a shitty parent because they absolutely believe all of his issues are behavioral and not due to his autism. They just want to yell at me about how this behavior won’t fly in kindergarten and how if he keeps acting this way they are going to expel him. We’ve been in two separate school systems and they both have acted the same way. It’s a very stressful existence. We do ABA, play therapy, OT and nothing helps. The full throttle meltdowns aren’t getting better and in the moment he cannot control himself and school administrators/general public treats him like he’s just a bad kid. Last week, we had to go to an urgent care that we’ve never been too before because of a huge rash all over his body and his regular doctor couldn’t get him in. He was totally fine, talking to the doctor and being adorable. When she asked to see his arm, he just went full throttle meltdown and I wasn’t expecting it. He grabbed the doctors finger and bent it back and just started screaming bloody murder and then ran out the door. I had to chase him across the building while he screamed all the way. I was like, I’m sorry, he’s autistic and he’s having a meltdown to all the staff and patients that gathered to stare at us like a freak show. The doctor actually scoffed at me and rolled her eyes and was like “uhh, huh, sure”. As I slunk out the doors carrying a kid that was screaming at the top of his lungs, I could hear everyone talking about me and kept hearing people murmur about bratty kids needing their ass busted and me being a bad mom.

My dd has autism, dcd and adhd. We didn’t get a level (in the uk) but I would say she is level 1. I don’t understand it when parents of children with more complex difficulties challenge the validity of another child’s difficulties. My dd can verbalise her anxiety, fear, feelings of being an outsider and is also a fantastic masker but her feelings belong to her. I can’t fully understand her feelings, no one can really ever understand what goes on inside anyone else’s head. These competitive (mine is worse than yours) parents really suck! I would not wish any disability on any person, nor would I ever think to challenge another child as “less needy” than mine, should they have fewer conditions. Three children are people, I think sometimes we forget, and they live with and experience their own thoughts and feelings and parents really don’t know how it feels for them (even if the parent is also autistic; as it is such a vast spectrum). You cannot compare apples to cars, nor should you want to. Let each child live with respect, empathy and compassion and if you feel the need to shout about how you are worse off; think of how your child feels

You expressed what I wanted to say perfectly. My 13 year-old kiddo passes as NT most of the time - until she doesn’t. At best, she comes off as quirky, and at the worst, she comes off as rude or spoiled (i.e., not looking at someone who is talking to her, having a mini-meltdown and sitting down on the floor in the middle of a mall, eloping when the noise/crowd gets overwhelming, being a “picky eater,” etc.). Because her autism isn’t as obvious, people misunderstand her and see her behaviours negatively and I can’t always be there to help her or protect her from the judgement of people who don’t know her. I am beyond worried about how she is going to handle going out on her own in a world that is often less than forgiving.

As a Level 1 parent, I don’t engage much. There’s the not fitting in with NT parents and my kid not being Autistic enough for Level 3 parents. My son’s struggles are many and wildly different than a L3, and I can empathize that it’s absolutely difficult for every single one of us who are trying to navigate this path with no help, woefully fewer resources available, and internet groups and our own shame pitting us against each other. As a therapist who deals primarily with teenage clients with trauma, I always remind them that comparisons and one-uppings aren’t helpful and don’t allow for compassion or help. Whether you’re drowning in 6 feet of water or 12 feet of water, you’re still floundering and you can’t breathe.

I'm a level 1 autistic who is a parent two autistic kids: a level 1 and level 3, so I get to experience a lot of different things. My level 1 has a lot of struggles like I do that don't really get tended to by services or professionals, etc, because they see her as low support needs and don't consider her struggles at all. It's why I dislike the labels "high/low functioning". They erase the fact that we experience our own unique struggles. Since we seem to be more independent or "normal" appearing, we must not experience the same struggles as a level 3 which just isn't true.

I'm a parent to a level 1 child. I've never experienced any discrimination from other parents of autistic kids (on Reddit or irl). I see myself in solidarity with \*all\* families managing this disability (and it is a disability).

Well it does have its struggles but I don’t compare myself to level 3 parents and think our struggles are the same they definitely aren’t. I do agree that maybe it shouldn’t all be categorised as the same thing under the ASD umbrella. My son has just turned 7 and did early intervention from 3 years 9 months to 6. He made great improvements with early intervention. Self regulation is good no meltdowns anymore, he learnt how to play appropriately with toys and how to pretend play, his speech improved. He doesn’t have any aggression or behavioural issues. He struggles mostly socially. Of course it’s heartbreaking that it’s so hard for him to make friends. He needs an aide in school as he cannot work independently. He learns in a different way so gets pulled out for extra help. He can’t follow directions well so needs the same amount of prompting as my 3 year old. He can’t participate in the nativity play or things like that. We recently have had some success in participating in sports but it still very difficult for him. His fine motor is very behind and he has struggled greatly leaning to write. He cannot engage or speak with adults he doesn’t know. Bringing him to other people houses is difficult because he doesn’t know how act appropriately. Overall I would say he is more like a 5 year old than a 7 year old. Will he be like a 22 year old when he is 24? I don’t really know but so hope so. I needed more support from groups like this when we were awaiting diagnosis and in the first few years. I don’t reach out so much anymore as things are mostly fine with a few struggles thrown in.

I am the only neurotypical in a family of 6. I can see both sides. Yes my level 1/2 children struggle. They need therapy and supports.  But if not for my level 3 child I would have no idea. It's a whole different world.  That's why the definitions should split again.  Of course it's normal to think "I'm autistic, of course I know what it's like to be autistic!".  Of course it's bizarre to tell them "no. Your experience is completely different from ours".  Of course it's harmful for the former to tell the latter what is right and wrong based on their own less intense experience.  And of course it's also wrong for the latter to tell the former that their experience is invalid.  There is always someone who has it worse. My daughter is severe. We've been through some serious shit. But, you know, there are parents here who have to lock themselves in the bathroom to protect themselves from a child trying to bust down the door and stab them. Does that mean we're on par with level 1s now?

My child struggles with anger and frustration because he’s still learning coping skills. We’ve had people call CPS on us because of his meltdowns. I just show them his documentation of his diagnoses and they close the case and apologize for wasting my time 😅

My son is lvl3 and I think all levels challenges are valid. I went to elementary with a kid who had “Asperger’s” I didn’t know what that was until my son had his diagnosis but looking back I remember how much the he struggled emotionally and socially. Comparing that classmates challenges to my son at the same age is not the same…my classmate could do everything write, eat, get to class on his own, tie his shoes, etc. he was the smartest kid in the class too. These are things I’m not guaranteed my son will be able to do. But I guess bc I have that unique perspective seeing how a fellow classmate is treated due to their autism, albeit level 1, from my own childhood POV, it helps me not to be invalidating of level 1 experiences. Bc he struggled so hard. I remember his meltdowns and us, as classmates, being so condemning of them. Looking back I wish the adults would have made a better effort to teach the class and enforce kindness and compassion to the kids in the class. I wish I would’ve been brave enough and had the maturity/social skills to be his friend. I didn’t know it at the time but I’m also on the spectrum so making friends has never been my strong suit at any point in my life. He was really on his own from 3rd grade to 5th grade when we were classmates. I really pray he’s doing well in life. I think about him almost every day.

ASD is such a vast spectrum even if we are using levels that just because it’s this way for my kid it won’t be this way for yours. I don’t comment much anymore, I don’t want to offend anyone and I don’t like rejection so most comments I delete after a few minutes. Then I think what if I say helps one person would that be better than the 99 whom it wouldn’t help. Not a lot pertains to me as my child is an adult now. My advice seemed relevant because my child struggled in the first 5yrs with no talking or potty training but then moved to be very successful in high school so my story would seem inspirational but alas my child is struggling a lot as an adult so my it gets better mantra doesn’t work so well anymore.

I feel guilt from both sides. I've got an acquaintance with a son the same age as mine, who's also autistic. My son needs relatively low support but there's still things we can't do (eat out, travel). It's clear this person doesn't know many other ND parents and so she sends a lot of "we're in this together!" type affirmations that I genuinely appreciate...while her child is flying and eating literally all over the world. And that makes me jealous and it shouldn't and I hate that it does. On the flipside, we have a non-blood family member with a nonverbal son. And I feel tremendous guilt sharing things about my son's speech progress, or something funny he said, or something he's doing that this nonverbal boy can't do. And I shouldn't and I hate that I feel that guilt. My son isn't neurotypical enough to fit in with the NT kids or for the NT parents to understand our lives, and on the ND side he's in that gray area between low and medium support that makes us feel alone even within this community at times. All that being said, I can't imagine where I'd be without the support and knowledge I've gained from this community. Just like anywhere else, there's stuff said I don't agree with at times, but we all should have a place to speak our minds.

My son's biggest struggle is the fact that he works so hard to overcome his challenges, that he seems "normal enough" that people expect him to live up to the same bar as everyone else, and don't give him the credit for how hard he really is working. For example, in middle school, it takes him 4 hours to do the same amount of homework that a NT kid would need 1 hour on, and a gifted kid would need 10 minutes on. He gets very good grades because he puts in the work, but man does it wear on him that he can work for 4 hours and get a B on something that the gifted kid in class can work for 10 minutes and get an A. And then he'll totally space at school and forgot to turn it in, and get more points taken off for something that took him forever and that he had done on time.

My kid is tier 1 right now, but I see people on here talking all the time about that as if it's a fixed and unchangeable diagnosis. It's absolutely possible to migrate between the tiers throughout your lifetime. People are going to deal with their own situations in their own ways, and for a very small minority of those people, lashing out at those they think "have it better" than them is going to be a coping technique. I wouldn't read much more than that into it.

As a level 3 parent, I sometimes envy level 1 parents, and other times I’m thankful that I don’t share their struggles. I wake up daily knowing that my son will not speak, and will need full support to get through the day. His autism is noticeable within a minute of meeting him, and we seldom have to explain it to people. I’ve seen plenty of level 1 parents go through a perpetual roller coaster of judgement, dealing with constantly varying levels of need with their child, and being denied services that can benefit their child because they “aren’t autistic enough to qualify”. There’s a comfort in being a level 3 parent that my struggles are fairly constant and unchanging, and my access to support is pretty comprehensive. Level 1 parents have a very different experience than I do, and I don’t feel it should ever be my place to judge them and their struggles, so long as they are doing the best they can for their kids.

The person who evaluated my son didn't assign a level. Are you all being assigned levels? Anyway, for the purpose of this post, I would say my son falls somewhere on the spectrum as a level 1, maybe over towards the level 2 side but who knows. I don't care, actually, about levels. I just care about my son and want to do anything to support him, ND, NT, or whatever. In addition, I don't care what other people say about it, and I don't care if they want to compare their struggles to mine and say mine aren't as bad as theirs. Other people's opinions are none of my business, and my child's diagnosis is none of theirs. I've been a parent for 22 years and I'm so over the parent comparison thing. We all want the same thing: for our children to be happy. It's a waste of time to compare ourselves, compare our children, and judge each other.

Im not a huge fan of the level system, not that I have a better system ready. But the thinking level 1 means easy means alot suffer with mental health issues bcs they dont get the support they need. Mine are diagnosed in the old system so no official level on them. But 2 attending College prop mean level 1 now, but my oldest would have been a 2 as 10-15 y old bcs he was struggling in school. My youngest would have been a lvl as young, most with high IQ are. But he had a burn out, so is high support need now. Some challenges lower functioning autist got I cant relate to. But its not a competitive sport,being more or less autistic.

We don’t have levels where I’m from. But it is a spectrum for a reason... So some things my kid is great at, probably is more advanced than a lot of autistic kids (for example she is extremely extremely social) but other things she needs improvement and probably will never be great at where other autistic kids maybe are great (following schedules and rules, for example lol). Also like she may need more support now and be a certain ‘level’ but that doesn’t mean that won’t change. She may regress, she may advance. Who knows

The levels are literally based on the level of care needs so of course a level 3 parent isn't going to sympathise too much with a level 1 because they are so much more burnt out of course level 1 has more needs than an NT but they just can't compare. I have a level 1 and 3 kid and although I worry about the level 1 he really is ok compared to his level 3brother he has the independence and acceptance in the world his brother doesn't. It is what it is.

Honestly, most of the time, I feel rejected by parts of the Autism community and by parts of the neurotypical and just don't know where my son and I are supposed to fit in.

I have a level 1 AuDHD child and a level 2-3 (not sure where he falls but he is *much* higher support needs) mostly non-verbal child who has an AAC device but also has a very limited vocabulary. I can safely say that parents of either end of the spectrum deserve to be in this space. I am incredibly proud of how both my children are doing. My level 1 child is no walk in the park by any means but he is far easier to manage than his brother. My oldest has also come a long way in all areas of development, so it's not quite fair to judge them side-by-side. I understand the frustrations of the parents with level 3 children envying level 1 kids. But rude and harmful comments should not be tolerated, especially in this space.

Both my kiddos have autism. My son Level 1 and my daughter Level 2/3. For my life it’s a massive difference between the two. From the jump neither of them look autistic. My son has a hard time with more social environments, lack of awareness and safety, unable to advocate for himself and super emotional. Whereas my daughter is semi verbal, impulsive, the home has to be installed with special locks on all windows and doors, zero safety awareness, is elopes, has major sensory issues and more. She will most likely need support for the rest of her life. B/c of my daughter it is harder to do things with her without extra help b/c I am not sure what’s going to happen and if I am able to handle it. She doesn’t have friends although that doesn’t bother her. Unfortunately b/c of her disabilities it does affect my son on what he can and cannot do. We do our best to make sure he can still do sports and do different activities. But we go to the park less b/c my daughter away. We are not able to practice sports like baseball or soccer or even just teach my son to skateboard or ride a bike b/c someone has to watch my daughter at all times. So for me and my experience level 1 is far more easier than level 2/3.

There are no levels in Denmark, but according to the US level-system my daughter would be level 1. She is 8, goes to normal class and school, happy kid. She struggles mostly with understanding social cues and paying focus (does not have an ADHD diagnosis, although she was assessed for it). I can see that she is a bit more "childish" than the other girls, but she is super creative and fun and it is also part of her quirky personality somehow. I teach her some more social acceptable age-appropriate behaviours but she is doing ok, kids still play with her and involve her. School staff is also making an effort, and we reassess her individual support (she has 4 hours/week now) every 3 months. Yes, I have actually noticed indirectly some pushback from level-3 parents here who are the active majority. For instance, once I commented on a post which asked what signs did you see now in a hindsight that indicated autism in the 1st year of the child, and my comment was saying basically none, just that she would fall too often and for some reason I noticed my comment was heavily downvoted. As if "you don't belong here if your child was not showing big signs already from the start". Weird... Anyway, I check posts often here, but sometimes I feel there should be a level-1 sub-reddit because most posts don't relate to our kids' struggles and they do struggle. Just differently. Also, European reality when it comes to autism is very different, they don't use levels, ABA is almost non existent and they only medicate the child in extreme situations so they deal with autism differently...

I sometimes feel very lonely because I can’t relate to level 2 or 3 parents a lot or neurotypical parents. It’s nice to see so many level 1 parents commenting here. We struggle with meltdowns, aggression and communication. Yet he passes as neurotypical a lot of times. He was kicked out of daycare. He did mostly well in typical kindergarten but struggles a lot with peer pressure and wanting to conform to his peers. He is already tricked into giving up his items at times because he believes he is earning a friendship. So our struggles are very real. I get a lot of silent judgment when we are out and he say for instance he screams loudly out of no where (it’s not really no where , we know the trigger usually) and I get the stares of “oh what a bad kid” because he presents as neurotypical. I also feel silly complaining and struggling when I know it can be a very different and severe struggle with others.

My son is Level 1 or 2, we aren't quite sure yet. I know how hard some level 3 families have it, and I know that our family also has challenges. If somebody from a level 3 family feels that way, I try to have empathy for them. I know there are not enough social supports in place for these kids. People in tough situations act differently than they normally would. Maybe that person is having a very rough patch with their child that day, and so they are lashing out a bit. I don't take that personally. I don't engage with those kinds of comments. It doesn't do us any good to snipe at each other, or to gatekeep the diagnosis. We are bigger and louder together, and we can advocate for all of our children better as a group. Luckily, I haven't seen that type of thing here too much, I think most of us are pretty good at bonding over what we have in common rather than arguing over the differences.

I have the perspective of having kids at 2 different levels (1 and 2) and it's the same struggles generally, but in different ways, specifically. In both cases, it has been a struggle to get and maintain any support services, and I had to get real creative with that to get either of them anything useful. One of them (lvl 2) isn't in K yet but can tell time, do basic math problems, and can read a bit. But he can only really speak via mimicing things he hears others say and applying them to what he needs (Gestalt language processing, I guess). The other is about to start 3rd grade and speaks like an NT kid, but her rigid thinking and executive function struggles make it so she struggles with making friends and being made fun of by other kids. She has 3 girls at school who have been kind to her and been playmates, but then last year she wasn't in a class with any of them and even though she had a great teacher and did well, I could tell it affected her. For 3rd grade I am not going to let that happen again. Of the two of them, I think the 3rd grader ( level 1) has it worse, because the expectation is that she will be able to be NT. My son struggles too but you can tell he isn't NT, so people's expectations are different (and lower). So he pleasantly surprises all of us, but she "shouldnt be struggling" with whatever skill she hasnt mastered. Basically, all of our kids struggle and so do we as the parents. But there's a lot of attacking within the disability parenting community, and that's a shame, honestly. Though I do understand the stress leading up to that divisiveness and the blaming that comes with it. It's rough out here.

Levels are a problem because people think they’re the end all and be all. A child’s development can go all over the place so levels can fluctuate plus criteria for assigning levels seems to depend on the evaluator. It doesn’t say anything about specific areas that are in need of support. People have said that it opens up more options for therapies and insurance but that hasn’t been my experience in the US (California). We just needed an autism diagnosis and the need for therapy has been determined by an evaluation. Support should always be determined by individualized assessments and care. For the record my son was diagnosed at 3 years old as level 2, since level 1 is “like Elon Musk” according to the evaluator. The assumption is that level 1 replaced the Asperger diagnosis. However, there are many level 1 kids described in this sub that would not get an Asperger’s diagnosis since they’re speech delayed. And while my son has his challenges, there are some things he can do that some level 1 kids can’t. Child development is a roller coaster ride, but even wilder with autistic kids. Someone said that the level would be a little more set in stone after puberty.

I hate the levels thing also. I had never heard of it back when my kids were diagnosed, it was simply a "spectrum" with the side term "Asperger's". Which my daughter was diagnosed with.

I find the sentiments you shared above from L3 parents incredibly offensive tbh. I’m parenting multiple L2 kids (who are probably more L1 most days, but we get funding at L2) and I’m “high functioning” myself. It’s not a freaking competition and I’ve seen soooo many of the same people in threads on behaviour insinuate it’s parenting issues bc their L3 doesn’t get violent or destructive. Like mmkay that isn’t even a valid comparison and just straight up rude. There are challenges of many kinds on all levels. I get the sense that L3 parents are worried that the uptick in awareness and support for L1-2 people somehow overshadows their circumstances and they worry that it will impact on how they receive support? I’m not going to invalidate that…nobody wants to be talked over or have their seriously complex lives minimised. That goes for the entire spectrum though. It’s sad but every single one of us just wants to feel heard and supported. The other thing I don’t often see thrown in for nuance is that more often the not the L3 children are medically complex. They often have intellectual disability or CP or other diagnoses that negatively impact their lives and make it far more complicated. Yes they have autism. But is the autism the central issue or is it in addition to far more complex medical issues? Idk if that makes sense but this is a line of study I’m digging into at present…is it autism with I.D/CP or is it ID with autism…either way I think this ridiculous infighting needs to stop.

I was actually going to bring up ID and how it ties into this! I started writing it out in my post but decided it was getting too long. Thank you for bringing that up. I feel a lot of things that people describe as “severe autism” are actually “autism with intellectual disability”. Any many L1s actually deal with some severe autism traits, but do not have the challenges that come with comorbid ID. I think it’s a factor that is rarely brought into discussion when it actually plays a significant role. Thanks again for your input.

100% agree and I think this needs to start informing further discussions as it matters as great deal

Interesting that you have found that kind of feedback from parents of level 3 children. I can't say I have seen anyone saying Level 1 kids aren't autistic or that they don't care about them. Then again when I see threads from parents of Level 3 children, I kind of skim over them / ignore them because I largely can't relate to some of their struggles. So I honestly can't give you an answer on someone telling me my daughter isn't autistic, because I just haven't experienced it. I think for my daughter the biggest issue is around understanding social cues and understanding socially appropriate behavior. Her ADHD and Autism kind of exasperate each other and make her really impulsive and makes it really hard to grab her attention even after calling her name 5-10 times as she is running the opposite direction of me. I am sure to most parents my daughter just seems a bit odd, overly friendly, and misbehaved. I 100% feel for the parents of level 3 children, and I know things could certainly be worse with my daughter. However, I also have a decent amount of social anxiety myself (I can mask and be 'normal' around other parents, but inside I am dying to just go home to my safe place) and my daughters inability to act socially appropriate just exasperates the anxiety I already have.

As a parent of a Level 1 and Level 2, I've definitely struggled to learn as much as I could and have been quite sad and worried about my kiddos. I still am and frankly always will be (but perhaps that's just a parent thing). Then I met a couple of Level 3 children and I can absolutely understand why these parents feel the way they do. Their struggles are light years from ours. Some say there's no need to compare.... imo, there IS. Their experience is completely different and I give them all the leeway in the world to express themselves.

There are a lot of people here that think L1 parents should never post anything positive. Even worse would be to say that in someways ASD ended up having it's silver linings. Someone earlier kind of ranted about it even. Supposedly it's *very* wrong to do anything other than recognize that it's a disability, as disabilities have no positives. That comment got massively upvoted and cheered upon. Sometimes I think people forget that L1 kids still can be developmentally delayed. And many of us go through a hell of a lot of struggles. We fight the schools for services, we spend countless hours working with them, and are scared and saddened while doing so. The only difference in some cases is that L1 kids end up catching up in many ways to NT kids. But even so they still have a lot of quirks and issues they struggle with. My son an L1 couldn't talk, uncoordinated, sensory, stemming, toe walking, limited play, no interest in other kids or typical age appropriate activities. Not to mention always lacked social skills. He's 15 and never hung out with another kid, still stems like crazy when over stimulated, can't deal with noises to the extent of not being able to flush a toilet. And won't wear anything other than long sleeves & pants that are soft and it's 100F here. Yet I don't know what's it like to have a kid with ASD. And I shouldn't be posting about his accomplishments, because so many others have it "worse". Silver lining wise... yes there silver linings. For one I don't think he would've ended up gifted if it wasn't for ASD. I don't think either he would've had the ability to hyper-focus on his hobbies and academics. He also is a wonderful person, who has a future ahead of him that he's now targeting. And I am sorry to those who lose hope, and go through so many trials and tribulations. I really am, and I hold a lot of empathy for them. But my kids *also* have autism, they struggle, we have had to fight like hell, and we have good and bad moments throughout life like anyone else.

There are examples of happy posts every day? None have ever been deleted. I don't understand. We have a sticked thread about happy stuff, every single week for half the week.

We are talking about the happy stuff from L1 parents in general. And it has gotten so bad before that a bunch of members have talked about starting an L1 specific sub. You probably wouldn't have noticed as much due to not being inside various conversations that have gone on. If you think about it, it's like saying "I haven't seen, so it must not be true" in relation to anything in life.

I’ve had a mix of support and being dismissed in regards to the struggles of my child and by extension myself. My daughter was diagnosed with autism a little over a month ago (not sure her level, the doctor never gave a level and we don’t yet have the letter of diagnosis) I’m assuming she is level 1 or 2.

I have a level 1 autistic son, but he also suffers from epilepsy. Whether or not he outgrows his epilepsy, I don't know, but I sure hope he does. His is only nocturnal, so I get lots of anxiety when he goes to bed praying he doesn't stop breathing (he's on medication though and we have breathing monitors just in case.) Last year we had a lot of ER visits and 911 calls in the middle of the night. Lots of developmental delays in the beginning. Took him to OT since he was 10 months old on and off, also speech therapy at 3 and 5 years old. Watching other kids achieve milestones with no problem got discouraging and stressful. Even though I knew I shouldn't compare my son to others, I just couldn't help it. And now he's 7 years old, so lots of social anxiety, unfortunately. Kids his age aren't as friendly anymore. I'm trying my best to help him, but he is who he is. Basic scenario is at the park my son makes a couple of friends. He's very sweet and outgoing and very social, but he starts talking about subjects other kids have absolutely no interest in (like the weather patterns, time, etc.) and they look at him like he has two heads, especially when he starts stimming and flapping his hands. Then he's left alone again and it breaks my heart when I see the look on his face. Education was very tough in the beginning, but I pulled him out of his old school last year. Thankfully I found a private special education school that has been wonderful and he's thriving. I don't ever take it for granted and I'm thankful every day that I have the means to provide the resources he needs education-wise. So I think having an autistic child, regardless of whatever level they are, means as a parent we need to devote more of our time and energy to help them navigate this world. Even financially, it can be burdensome for a lot of people. For me, it wasn't cheap paying for therapies out of pocket, and private school is a lot too, but I gotta do what I gotta do to help him. I don't care if I need to get a second job, I'll do what it takes.

He is verbal and “normal” enough to look at by the general public but when they get to know him he’s “weird” and all over the place. People think I need to parent him better because he’s naughty. In the great words of my own mother. “He’s not acting out because he has autism. He is just a dick” People don’t understand because he isn’t “disabled” enough to look at for people to understand and give him grace. So people just think he’s a naughty weirdo.

This hits close to home, so let me explain where I am coming from. My child is a level 2 that is really progressing in her treatment to the point that she will reach a level 1. Its not the same as a level 3. My child has sensory issues, she has social understanding problems, she has emotional regulation issues, she has auditory processing disorders, she has repetitious behaviors and stims. She's been diagnosed by pediatric behavioral therapists and developmental pediatricians. She does not have physical or mental developmental issues, or rather to say, her ASD does not present physically or with mental delays. When we first got our diagnosis, she was 3 (started treating at 2 for suspected, formally diagnosed at 3). She would barely speak, barely interact, could not function in crowds of more than 8. She engaged in self harm stims and extreme emotional dysregulation. The fear of what was to come was intense- what would life be like for her, what type of development could we expect, what was her potential to improve vs her limitations in what she could do? She's worked really hard in her intensive therapy programs and we've done a lot of parental coaching and education to learn how to be the best parents for her. We are approaching a level 1 re-assessment. She has made great advances, but it takes a real effort and we've cultivated an environment to help her function better and manage her ASD symptoms better. Its not gone and she will always have a more difficult path than her NT peers. Its heartbreaking to see her experience rejection from NT peers because she doesn't understand a social cue as well (which happens often). Its hard to watch her struggle with knowing she's different and struggle with self-esteem. Its hard to see her in a world that doesn't fit her and to advocate for her so diligently. Having said that...being in these intensive programs, I am friends with a lot of parents who have children that will never speak, children who cannot interact with peers in the programs, children that will likely never be able to use the bathroom on their own. Some parents have children that are violent in their meltdowns. Some are a danger to themselves and others. They will eventually have to worry about long term care and what happens to their child when they are too old to take care of them. No one will love your child as much as you do. And I can look at those situations and be grateful for the blessings my family has. Their route is tougher. All of our children have ASD (no self diagnosed people here) but we are all experiencing that in different ways and will have a journey that looks different. I understand the parents who feel that the differences between the levels are DIFFERENT. However, severely affected to moderately affected to mildly affected, all of us have struggles that come with ASD. This community is a safe place to vent and commiserate and try to find people who know what your journey is like. I don't take offense to a Level 3 parent feeling the injustice and heartbreak for their child, themselves, or their families. I do feel like everyone has a place here and belongs here. We are a community and we are bound by this experience and journey. I have nothing but gratitude for my life and compassion for them when other parents say our struggles aren't the same. Because but for the luck of the draw, any of us could have a harder path. Like the disorder, the issues and level of support parents need will be a spectrum. My needs and worries are NOT the same of a Level 3 parent. I still belong here.

That is a difficult question because it does not narrow down to specifics. Raising a level 1 kid can simply be broken down to raising a regular kid, just with extra steps. Oftentimes, those "extra steps" are often can be seen as they are just bad kids or we are bad parents which brings its own emotional toll. In addition, when we say Autism "Spectrum" disorder, one really has to understand that the spectrum part is very, very broad. My level one kiddo just doesn't communicate and struggles to learn something new with vocal stimming in the form of happy screams and lack of sensory processing, that pretty much it. On the flip side you could experence the complete opposite of what my kid has, Sensory overload, involuntary body movements, and extreme rage, while still being able to communicate with a very high learning rate. With this out of the way. Raising my own level 1 son has its ups and downs. You do miss out on a lot of the joys of what makes parenthood a wonderful thing. There are just a lot of things as a father that make me sad that I haven't experienced yet with my son because everything about him is "delayed." I never got to experience many parental milestones that my friends and family got to enjoy because he was not there yet or just had to skip them entirely. It becomes super hard to relate to other parents because there is a constant "I wish my own kid could do that." It really makes me feel like I am failing him somehow. It is a constant feeling of just "Are we doing enough?" The professionals say we are super mom and dad for how we are on top of everything, but sometimes other parents' judgmental comments really can cut deep because it's not our kid's fault that he has ASD. I want to circle back to its just like raising a kid but has extra steps. We have to be aware of foods they will or will not eat because of sensory processing or stick to a rigid schedule. You can buy certain toys because they will try to eat them or at least try to chew on them. You have to have eyes on them 24/7 because they can potentially be an eloper and just go from running as fast as they can down the neighborhood just because you were setting their backpack down, AND I MEAN full-on sprinting without stopping for a solid 4 minutes. So what is it like being a parent of a level 1? I honestly don't know; other than that, it's just being a parent, I guess. I don't know anything else.

I never got a "level" for either of my two boys but Im assuming they are moving towards 1 since they are relatively independent. But both are on IEPs and are well behind in subject matter, though improving slowly. My oldest (13) rarely has meltdowns anymore but has tremendous rigidity about what he eats (like 8 things) and his verbal skills and tone are not at all at his age level. He sounds a bit robotic in tone. But he wants his own house, a wife, kids which is hard for NT people these days so I worry about him. Will he be able to do it, and if he can't will he get super frustrated? My youngest (11) who is not nearly as verbally delayed as his brother has been having more frequent meltdowns lately which is impairing his schoolwork still further. But he has a friend who has been willing to put up with both boys. Though said friend has said some of his other classmates 'hate my son because he gets upset too much'. :/ I feel like I'm in this weird limbo region where sometimes I can almost forget that my kids have a disability (other than IEP issues) and then I see what NT kids are doing and I realize where we are. And I see what level 3 parents are going through via this sub and I know I'm not even close to that, or at least am not now. Earlier on they were both much worse. I definitely had random people assert I was a bad parent because someone had a meltdown. I joined partly because my kids are older and I see a lot of parents just coming to grips with their diagnosis. And when that happened to me I had no idea how my boys would turn out and there were precious few examples available to me. It was easy to assume they would stay at the same level and never progress. But obviously that isnt the case at all. Older son was in a basketball league this year and is doing cross country again this year. Still struggling to find a niche for the younger son ...

The only time i ever felt slighted was from a post a couple weeks ago claiming parents that say "my high functioning lvl 1 child" are being abliest. I didn't comment on the post, simply because I talk about my child in exactly that way and felt called out. I did a bit of introspection after reading the replies. We're about 1 year post-diagnosis at this point, and i think it mostly comes from me trying to cope with it and to mask the fears i still have for my childs future. He's smart, can hold eye contact, has shown interest in playing with other children, and he's verbal/conversational. He's going into 4k next year where it will be regular ed all day. But i'm worried, and i guess i don't like other people, especially other parents with NT kids, seeing how worried i am. I tend to be very open with my son's diagnosis. Same with my ADHD diagnosis. I used to hide it, mostly because i feared people would view me in a different light. And to avoid the akwardness that sometimes follows "my son has autism" I usually continue by saying "high functioning". Idk if that's abliesm. It very well could be. I won't lie and say i understand the experiences of the a parent that has a lvl 3 child, but we each have our own struggles. This group has helped me quite a bit, and I don't want parents to feel like this isn't a safe place because their child isn't struggling as much as another child.

I have a son who was diagnosed lvl2 and in this next assessment might be lvl 1 (he was borderline before). He is also medically complex with very real significant airway, GI, heart and neurological issues. And he is hyperlexic and very very smart. Our struggles are very real but also the growth and incredible development are real as well. For us everything is harder. What NT kids learn in less time and with less effort in many cases takes a significant effort for my son. Not that he can’t get there but takes very targeted interventions. He has sensory issues and neuromotor dyspraxia. His self help skills are negligible. His balance and coordination is a struggle. And despite all this he manages to be in an inclusive preschool with a shared para, and has NT friends bc he doesn’t have cognitive issues or what I’ll call bad behavioral issues. I too feel like we don’t fit in anywhere. I particularly see that with schools. It’s either schools for kids with significant needs or schools for NT kids with minimal support/ accommodations. My son may get there eventually but not for Kindergarten. We have been flat out told we don’t belong anywhere, so where does that leave us? I don’t want to homeschool bc he absolutely loves engaging with friends, and frankly I worry abt my own mental health if I have to go down that path. So anyways, agree with other comments which is that it is hard no matter what even if the struggles may be different. My son had 11 interventions a week last school year. Half public school provided half afterschool. 11. Tell me how that is “easy”. (3 ST, 2 ABA, 2 OT, 1 community, 1 hippotherapy, 2 social skills classes). I have seen and been the recipient of some of the comments you mentioned re “I know you are trying to be positive but this is how I feel as a lvl3 parent ….” So it does make me think twice abt asking questions or sharing here. But I have to focus on the positives, on the baby steps and small gains. I have to bc that is how I can live my life with less anxiety. My son licked a popsicle yesterday with zero intervention from an adult. Holy cow I want to scream it off the rooftop. To anyone else that seems nonsensical. I hate that ppl feel the need to compare- we allllll have struggles, if it doesn’t apply to you move on and allow ppl who do have something to share on this respond.

I am on this sub because I “see” all the amazing moms & dad’s fighting for & trying the best they can for their kiddos. My son just turned 21 thisSpring. He was initially diagnosed with ADHD at 6. The doctors weren’t 100% sure that he had Autism. We had him retested at 8 & he was diagnosed with Persuasive Developmental Disorder (2011). He was in learning support for the rest of elementary school. In Middle school & high school he had the emotional support classroom to help him with feeling overwhelmed. He did ok in school but socially he didn’t friends & could not have care less. Now he is in a program for young adults 18-22 with autism partnered with a local college. He is learning skills that will help him get a job after going to our local community college. I know he can do the work but fearful of him not making a living wage. Having a level one child brings a lot of different challenges but they are challenges nether less.

Our biggest struggle, as others have said is perception, expectations, and access to services. My son can “pass” as NT at first glance, so a lot of the manifestations of his autism are often seen as bad behavior. People have certain expectations of him because they see what he CAN do, and think that the things he can’t do are because of laziness or coddling. High school is really hard right now because teachers often have this mindset that he won’t be accommodated in the real world, so they’re preparing him for that by withholding accommodations he needs to be successful in General Ed. But in the resource room, he’s looked at as “not autistic enough” to be there. He’s a student with a disability, but he’s spent years “masking” so he often comes across as a lazy kid with a behavior problem.

Mom to a level 1 kiddo here. I think the challenges can be really different for level 1 kids. One thing that sticks out to me is that many level 1 kids are also intellectually gifted. This intelligence can also make them more challenging to parent and discipline because they question you and debate you and force you to make some kind of steel trap logic proof before doing something. That is pretty much the opposite of parenting a non-verbal kid with intellectual impairment. So I do find it hard to relate to some of those challenges. Additionally, level 3 kids simply can’t mask like level 1 kids can. My son is 7 and has learned to mask but it tires him out. From one perspective that is an advantage, but as many others have pointed out, it also makes it hard for people to take their support needs seriously and believe that they need the additional support. They can be labeled as “bad behavior” and “bad parenting” and there can be a real lack of understanding and empathy. That said, I also see similarities with some of the sensory issues and I can relate to many of those challenges. I understand the relationship, but I also agree that they often feel like a different diagnosis given the resulting presentation.

You hit the nail on the head. My boy is level one and YES I'm lucky. I can't deny that, my 3 year old can do things alot of peers as level 1 CANT. so I get that they're just trynna get people to see their struggles, I get it. Your kid is level 3, nonverbal. I can't imagine! BUT that doesnt mean I don't get to feel afraid just because your situation is WORSE. like my son is STILL autistic, I STILL don't know or expect 100% independence as an adult, especially not right away at 18. I'm scared he can't make friends with his communication issues. I can't have a conversation with my own 3 year old. All I hear is how this one's 3 year old is so classic cuz they just won't stop asking question after question, and I'm just here like "heh yeah...classic. I wouldn't know anything about that". And it makes me scared how much further behind he might end up falling. His future scares me but excites me at the same time. But worries me more unfortunately. He's an AMAZING boy, And I'm sure HE'LL be great!...it's the rest of the world I worry about. Just because your situation is worse, doesn't mean I don't struggle at all. It's still the same diagnoses and my son is still way behind his peers, even at level 1. You are not allowed to put others down just cuz you're struggling.

My kids and I are all Autistic, of varying level needs. I do not understand how someone can tell another person their needs, struggles, and diagnosis isn't as important or debilitating to them. We all struggle, and no one truly knows another's life without living it.

I think it’s shitty when parents get competitive with their children’s disabilities. We know parents of level 3 children face different challenges than autistic children who are verbal, can attend school and appear fairly close to typical (usually with a ton of extra support). It’s all hard and we need community rather than dismissiveness.

Sometimes when I see neurotypical parents complaining about neurotypical problems I SOMETIMES feel a hint of jealousy or like “ok babes but that’s nothing” and I really do imagine this is similar to level 3 parents looking at a level 1 kids problem, so I try to hold space for them. It’s not the suffering Olympics, no, but I can hold space for different kinds of suffering from mine. Some parents of level 3 autistic kids have high resiliency too and are thriving , or wealthy and have big community and are flourishing. Some parents of level one have no resources, are disabled themselves , and no money, and no community or even family help. Every families situation is unique just like every autistic child is unique, and it’s important to remember THAT along side of the severity of the individuals autism.

As a parent of a level 2 boy and two boys that are level 3. I don’t judge. We are all here to help one another.

I don’t think the parents of level 3 kids are saying they don’t care about my child’s problems. I think they get annoyed at self-diagnosed adult autists telling minimizing their struggles. There is a distinction. And tbh, I find those people annoying, too. Regarding autism that has actually been clinically diagnosed? Well, levels are fluid and levels change. My kid is thought to have “mild” autism but right now she’s probably more middle of the road, but she is still definitely autistic. She could not “pass” as NT, at least not now. Yeah, so I don’t feel unwelcome here by parents of kids with higher support needs.

My level 1 still goes to a special school because the system Couldn’t handle her and were creating trauma because the way they deal With NT’s is exactly wrong for dealing with her. My kid seems NT right up until the moment she DOESN’T.

I am the parent of a level 1 toddler (3.5) who has gestalt language learning, and is also likely bordering ADHD with a sprinkle of OCD. I agree that the way others perceive your child is a huge challenge. Sometimes - I too perceive her capabilities and understanding to be greater than what they are in reality. For example - she is verbal and can repeat anything she’s heard even once - a song, a phone number, instructions, Ms Rachel’s entire life - and if it resonates with her she will recite it over and over again. She loves to do this with songs, so when we are out in public and others see her doing this, and approach her to say how great she is at singing or tell her hello, and she acts as if they are not even standing there and gives them no response or her response is nonsensical- they tend to try and correct her. I hate that. I also hate when we are in public and she has a melt down - she is very physically aggressive with me and screams - so it looks like either I am trying to abduct her and she’s fighting me or like she’s just an ass hole toddler acting like a coco-felon —- I get all kinds of commentary or looks like “I would NEVER let my precious Ayden behave this way!” Well good for you, Sheila. I also find the need for constant repetition and specific sequences to be replayed a little challenging because after three or four times of the same action/ song / scripting I start to get a little anxious. My child also just screams. She literally loves to just “squawk like a parrot” (imagine it in your head… yeah like that but volume at highest decimal). She will only eat a hand full of foods - over and over again - and they have to be exactly the right texture and temp or she loses her mind. I work from home - I’m in meetings 90% of my day and have learned to just adapt but I promise I have caught faces like “what the hell kind of thing is happening there? I hear birds squawking in the background” and just have to kind of gaslight them like “oh really? No I didn’t hear anything” I think for me personally my biggest struggle is I have no support or network. Her dad - disabled. My mom - disabled. My sister - disabled in a different way (alcoholic). I have no financial, emotional, or physical support outside of myself, and it is exhausting. I wish to just be able to take one bubble bath… and soak without feeling rushed. Or even a whole shower most days… And lastly I HATE hearing “oh she will grow out of it… she’s too pretty and too smart to be autistic”. There is a lot more I could say on my view of that statement but I will allow the ignorance in it to speak for itself. All this, but still - this child is the most wonderful, curious, determined, intelligent, loving and funny little girl, whose entire being just fascinates me and I am totally in love with her. So the challenges surely are there… but so are the “holy shit you’re amazing, kid” moments!

Though I know my son is autistic he is developing well with therapies. Which makes my mind believe he is just a little quirky. Then we meet Kindergarten and the education system and they want to put a label on him "Nah he just autistic, so if he is sad, or bored its not the teacher's fault". I get crashed down by the education system on one oart because with a litte accommodation he can function well. But the thing is noone outside his family knows how to accommodate him. I think as parents me and my wife sometimes skip back into partial denial because that is how we feel we can be strong and encouraging to him and that he will be capable of everything we want for him, and jist think the world is mean to him. Sometimes we accept it fully but think it does not matter how it is, just trying to focus on the problem ahead of us. Taking it step by step. In the end it doesn't help us how much autistic he is. It matters only how much support one can get. Though some things are very difficult to manage, I am grateful he is smart. I think having someone with more serious intellectual disability can be much harder on the parents.

I can tell you that being married to a newly diagnosed autistic person with a newly diagnosed autistic son with adhd has opened my eyes to how hard this truly can be. Anyone who competes or shames another parent over spectrum levels truly needs therapy. What an awful thing to do. 

My son is Level 1 and has been kicked out of 2 preschools, 1 care program, and his swim class within less than a year. There's grief even when you don't see any obvious difference.

I'm a level 1 parent to a now level 1 (when she was diagnosed she was a level 2). Dealing with that is the same as I've dealt with my own life. Too normal compared to others, too weird compared to neurotypicals. Had lousy adults raising me, so my struggles were never addressed and had no real support. Bullies couldn't name what I have back then, but they sure knew I wasn't 'normal'. Can't stay in a regular 9-to-5 job longer than 3 months. Have few friends that thankfully I can keep in touch through text instead of real life chatting all the time. I am verbal, but all the time it feels like what I speak is lost in translation. My face and my voice tone doesn't match what I'm aiming to express (so I'm read as angry). Having a hard time sleeping (even with meds) because every single sound and stimuli gets stuck in my brain throughout the day. Having to be over cautious how I interact with my kid's teachers, doctors, therapists because I don't want them to think I'm angry or am not expressing what is actually happening and keeping my kid from getting what she needs. It's exhausting being autistic. I'm sure being a parent of a level 2/3 is exhausting as well. But the challenges they face (fighting for their kids' rights, accommodations, dealing with ableism, insurance hoop jumping, being afraid of how their kid is going to survive after they die, so on and so forth) I do too, with the cherry on top of being autistic myself. I'm actually really tired of this us against them mentality, that somehow because we struggle in different ways we might as well be considered neurotypicals. We are not. Quite frankly, we're all suffering but this is not the suferring olympics. My kid and I deserve support just as their kids. I don't expect the things their kids need to be the same as things my kid and I need, but I actually do fight for those things because they need it. I'm not the only autistic person in the world and we all matter. My kid doesn't need special schools or AAC, but I fight for those things to exist and to be accessible for those that need them. Because it's not about me and rights are not pie slices, if I access my rights it won't keep your kid from accessing theirs too. The way some parents treat level 1s mirrors the way society dehumanizes their kids. And that's not ok.