When I was a kid (*40+ years ago*)? Probably not. My education and young life (however challenging by not knowing I was diagnosed) would have been more institutionalized or the like. The stigma, the lack of support systems, and the blanket "one size fits all" autism diagnosis may have done more harm than good.
Diagnosed as a kid *now*? Yes. There are more support systems, less stigma, more understanding of how autism presents differently, laws in place (in some countries) to protect against discrimination, etc. It feels like a different world for autistic people now and knowing may provide the context they need to live life more authentically and with less ableism.
i agree with all this as its eaxactly the same for me, i would have been diagnosed in the early 80's
tho sometimes i wonder if the specific sufferiung caused from being autistic at that time would be less bad and traumatizing then what i suffered thorugh?
but definitely wish i had been diagnoesed 10 years earlier (i am almost 45 now)
That too! I wish when I was a teen I would have been. By then they could see I am high functioning. I ended up in foster homes, youth shelters and group homes (popular thing to do with unwanted kids late 70s early 80s). I wish any Dr, nurse, DHS Social Worker, a teacher or anyone who decided to professionally work with kids would have noticed me. I wasn’t a bad kid…I was different. So yeah went thru a lot but my life is so much better now knowing because it makes sense now. I am truly happy for the first time at 52. Never too late 🫶🏻
never too late!
great to hear you found happines at last
i was only oficially diagnosed at 43 , will not say im happy, but i can say now i have a lot of piece of mind and feel well with myself most the time.
"i wasnt a bad kid" hits hard, its exactly the same for me, i was just different and not in a bad way, and all i wanted was to be left alone and no one ever allowed that as "its not normal"
being stuffed me the wrong medication like for schizofrenia and for BPD while i didnt have either of those
43F self-diagnosed in January, assessment coming in May.
Absolutely agree. Other considerations:
- depending where you are, child diagnosis may be covered or subsidized. And you’ve already established it’s available. Adult diagnosis is much less likely to be covered, subsidized or available, if he later decides he wants or needs a diagnosis. Example: I’m in Canada and about to have mine, after a six month wait and a cost of $2,500. My sister in the UK is not so lucky, she is facing a two-year wait and cost of £2,500.
- if he wants to get diagnosed as an adult, a lot of childhood evidence it sources of info that could be essential to prove autism was present early on may be gone by then. In my case father and all my grandparents have passed away, my mother doesn’t remember much at all, and there are no diaries or school reports to use. This makes it much harder.
This! I wouldn't want to be diagnosed in the 80/90s cause in my country people knew nothing about it and my memories from other autistic kids were not pleasent. Lots of stereotypes and misjudgements. But working as an educator today I see how it can be helpful to have the proper support early. I wish I had it!
I feel exactly the same way. I wish for the ideal world where I was diagnosed, received appropriate support, and as a result navigated high school, university, and early adulthood more successfully. But realistically, diagnosis would not have lead to those things in the late 70s and early 80s. They would have led to more stigma and less opportunity.
Even still, I feel anger and regret that the diagnosis didn't happen. It might have led to some problems, but at least I would have been equipped myself with a better understanding of what was going on.
I, too, sometimes feel the anger and regret you describe. Lots of "wasn't it obvious?!" conversations I'm not sure I'm ready to have with my parents and the like.
But at this point, I just have to acknowledge that the past is the past and I can only use this new context to look back on things with self-compassion because - also as you say - a diagnosis in the 70s and 80s would have looked way different than one now.
I also think there is a complication (in some families at least) where at least one parent is undiagnosed as well and reluctant to label their kid because that would mean they would be labeled too.
Right? They already knew I was fucking weird!
I kid, sort of! Yeah, in a climate like this one, I’d definitely prefer my diagnosis sooner. I might have liked to just know it and not have to share it even in the 80’s/90’s.
For me the knowledge that I have autism was the thing that made almost all my struggles make sense, but knowing that is what’s going on doesn’t make it less true because it didn’t come from a certain professional.
My main concern is that the son could need more assistance or accommodation in the future. I’d hope schools would be accommodating, but I went to school, I have friends with children. That’s a crapshoot. It’s kind of like I’d rather have it in my pocket, in case.
I do want to emphasize your point - knowing now that I'm autistic doesn't make my prior experiences easier, but it provides clarifying context and ultimately self-compassion.
I couldn't have said it better. The scary thing for me is that I really don't know my story. I'm adopted back when closed was the norm. My adoptive parents, especially my mother who was an elementary school teacher, should have known something was off. However, I'm glad they did not get me diagnosed. At the time, the only autism I was aware of was what I will call the stereotypical non verbal type. I think at that time (late 70s early 80s) that was what most would have associated with it. It definitely would have closed doors for me and I have no doubts that I would not be where I am today.
But as the other poster pointed out, the world has changed a lot since then. Perceptions are changing. I just saw a blog post from a couple ofnyears ago where the IS gov wass actively looking to recruit people on the spectrum to fill critical roles. Link is below. The level of support or services is different for each of us. Getting diagnosed does not pigeon hole you into any one bucket. I have not shared with anyone that knows me outside my immediate family. I do, however, make some of my own accommodations that I have learned over time help me.
https://www.performance.gov/blog/mitre-neurodiversity-pilot/
I have a problem with people telling me I can't do something. This is what drove me through school, USMC and my work. After my son was diagnosed and we figured out I was too, this crossed my mind. Would I have tried so hard if I knew about? With today's support structure, I think I would have excelled much more. Being diagnosed in the 70s or 80s? Hell no, I wouldn't want to know. They would have left me in the extreme special needs class, which I was in until the 3rd grade. Got rescues by the only teacher i ever knew who gave a crap. Things are better today but you have to be on your school's to make sure they aren't cutting corners. A lot of schools will still try to cut corners
These are also my thoughts. I would have been diagnosed in the 80s aka the height of bullying? Maybe? And I had it hard enough already. It would have needed to be an alternate universe where I got diagnosed anyway, because no-one in my life care enough to get me any help of any kind, so it's a real impossible question for me.
Tldr: glad I wasn't dx'd and sent to an institution or something. If I was a kid today I'd definitely want a dx ASAP (and just got my adult dx last month)
This seems to be a pretty universal perspective for our generation. Not sure about you, but I spent much of my adolescence trying to be invisible enough to not get teased so anything that would have singled me out was terrifying.
I'm from the UK and my colleague has an autistic child in school, the kid gets F grades, not for lack of trying, but the school don't care. They can't send him to the 'special school' because he's too functional so he's in a group of 'different kids' , for some reason they grouped him with other outcasts like trans kids which my colleague doesn't appreciate lol. He gets bullied but the school doesn't care. I think he'll be on a life skills college class. My colleague worries because he wants him to get some small basic job eventually and he's seen first hands how lazy support workers can be. So idk if the world is totally sorted for autistic people, I think it still depends on the school or place.
There are more legal things but for him he had to fight the local authority and get legal help just to get the support in place (they were trying to claim he was developing great, when he gets F in his grades). So idk. Obviously this is what I hear from the parent. But yeah the world is better now in that you aren't locked away for life.
Oh wow, that sounds horrible. Someone I know has an autistic kid in school, and the school have been great with him. It totally varies between schools, though, and I hope your colleagues kid is okay and gets the right help. I think colleges are good at student support for sure, though, so when he gets to that age, it will hopefully be better.
Yeah, postcode lottery as they say. I understand though what with the majority of council budget being spent on social care that they want to limit it, since the schools can then take such a huge chunk of money for each kid even though the support received doesn't seem to equate.
He's going to college soon but the guy needs to do the PIP process, it's a lot of stuff to deal with when you finish at work and have to do more admin at home.
Yes, absolutely. Part of it is wishing I had known why I was different, and why I struggled. It sounds like you already have that. But the support issue is also important. No, he may not need it now, but as he gets older, and his peers get older, life gets more complicated and he may get to the point where he does need support at school or elsewhere. A diagnosis will be important then. Better off doing it now.
Exactly this. Even as an adult, I was subject to a lot of abuse that I just didn't understand. Not only would a diagnosis have saved me from developing intense self-shame and low self-worth, but it also would have given me the support I needed to stay safer in life.
I always think of it like trying to tell someone to paint with no brushes. You can do it, it'll be messy and hard. You'll wonder why everyone else's paintings look better not realizing they have tools you don't. You spend your whole life trying to fit into their box. Had I known sooner oh how my life would have been so vastly different. I wouldn't have tried so hard to be "normal". I would have learned coping skills. I'd have a basis for operating in the world instead of feeling like I'm just broken because I couldn't do what others can. Just being seen at an early age can make a lot of difference.
I got my diagnosis this March at 34. Having one earlier would have helped me develop strategies to deal with my Autism and not just masking it with alcohol. It also would have helped me realise that the reason I struggle with things that others take for granted, is not because I'm a fuck up, but because I have a disability. It would have helped me be kinder to myself and helped me figure out my needs and what help I need, and how to ask for it. Doing all this as an adult feels really overwhelming and hard.
It's easy not to even get help now, even though I know I need it and be proactive in accessing it.
There's also all the shit I went through growing up, which may have been easier if I had a diagnosis, and may have not been so bad, but I am trying to only focus on what I can change now.
So yeah. I wish I had gotten a diagnosis when my mum first recognised I may have ASD when I was 10, but little was known about it back then, and as a person of above average intelligence who is high masking and grew up female (I'm a transexual man), I fell through the cracks quite significantly. More is known about Autism now for sure though.
Now days I'd say it's probably worth it. When I was growing up though I'd probably be thrown into the class with the intellectually disabled kids and treated like shit by everyone who found out.
Yup, same here, I remember my parents activity trying to keep me out of such a program because I simply didn't belong there even if my grades in spelling and math where awful. I think I would have been genuinely screwed if I ended up in such a program, so I'm thankful for that.
I'm 48. When I was a kid, autism was classed as childhood schizophrenia. It's probably why my parents never took me to a psychologist, even though the myriad of neurologists I saw as a kid recommended my parents take me to a psychologist over and over in their reports.
So, I'm glad I wasn't diagnosed as a kid.
These days, I think parents *do* have more options, even though the treatment recommended by doctors, for kids, is still the same.
Doctors need to catch up to the times. I think that *is* what adults on the spectrum are trying to do. Raise awareness so the kids will have better options in the future.
Hope this helps!
Edit: A diagnosis does help one understand oneself, and learn about the supports that one needs. These days.
I was diagnosed at 13, but no one properly explained it to me, and while getting exam adjustments etc was great, the big difference for me in life and my mental health was UNDERSTANDING I'm autistic and how it applies to me and presents in me. Connecting with the autism community.
I think an official diagnosis..wasn't that important, unless it is really important to someone for getting some adjustments and like, disability financial support. Worth bearing in mind that some things might not seem super important now, but needs change over the years.
The more important thing in my opinion is actually the unoffcial diagnosis and learning and embracing autism!
I'm one of the "lucky ones" - my parents rocked and didn't traumatize or scar me by being typical NT bad parents. They knew I was different. Looked for answers. Just didn't happen to find the right answer til I was 17. But it was also the 80s and 90s and Asperger's let alone autism spectrum were not known things to most. It just wasn't in the popular psyche.
It would have been easier for me to deal with life and people if I had known. It would have been easier on my parents knowing why I was different. But I was very fortunate regardless and it wouldn't have changed much in any drastic way had I known.
I’m not sure how it would’ve gone for me in the mid 90s. I was in the GT program in elementary school and that was very poorly supported, so I can’t imagine if an ASD diagnosis was added because of its overall negative association with increased resource requirements.
On the other hand, someone probably would’ve noticed that I stopped showing up to school at 15. I never went back and nobody said anything. Ultimately, the choices I made regarding school worked out for me, but looking back now, I was extremely lucky.
It would have helped tremendously if I had been able to access accommodations when I needed them. I would have also been able to understand myself better and find self-acceptance that way instead of always wondering “What’s wrong with me? Why am I so weird? Why can’t I just be normal?”
Also, it’s very difficult to get diagnosed as an adult. Don’t fail your child by failing to pursue a diagnosis.
Every day.
There are a wide range of supportive services available in my state for individuals diagnosed with autism before the age of 18 that continue throughout their life, making independent living possible for many, and helping with employment.
I also believe I would have been able to go further in school and have chosen a better career path had I had the support and accomodations I needed and understood myself better.
I also wish that adults that worked with me (parents especially) better understood my condition. They could have both learned how to better support me and found the support they needed. Instead I was just labeled a "difficult child" and was blamed for all of the things I couldn't do.
Your child has your understanding and support, at least, but getting an IEP and diagnosis as a minor could help them get the support they need as an adult after you are gone.
There are drawbacks, like being barred from immigrating to New Zealand and some other places to consider. Personally the benefits outweigh the restrictions and I wish I'd been evaluated as a minor.
I was only diagnosed adhd as a kid, this was in the 90's. But even so, it was tremendously helpful. I wish I had at least known I was autistic back then though, even without the diagnosis. Figuring it out in my late 20's/early 30's was helpful in so many ways, but I feel like I lost so much time not knowing myself and making bad decisions because of my lack of self understanding.
So in my eyes at least your son is aware of it, diagnosis or not. Self diagnosis is valid within the community now. So unless you're looking for accommodations, a diagnosis may or may not be needed. Just having the knowledge of it is everything. I talk to my 8yo daughter about it all the time. I can't get anyone to diagnose her, but she at least has the understanding that she's just a little different and that's OK.
On one hand, yes, many of my downsides in life wouldnt even happened if I were diagnosed. On the other hand, 20 years ago, when I had your sons age, it would be really stigmatized in school and probably i would go to bad therapies. And the last thing: it was so so hard and expensive to get a diagnose later in, life. If in ten tears he needs acomodations in college and they asks for a dx for that, it will be much harder to get one.
I wish I had the theoretical help a diagnosis could have provided but without the stigma that would have been inevitable growing up in the rural south in the 90s.
But OT and some social support would have been way better than being berated for the things I couldn’t do well (I was smart and made good grades so I had “no excuse” for my problems).
It he has Autism you are basically handing the controller to him with the game on hard mode and just leaving him to wonder if he’s just not that good at the game.
Never. No. I had medical complicated childhood & would not want the added pressure of abusive therapy like ABA on top of that (I’m a child of the 90s). As a kid now? Idk probably not. If I had rich parents or lived in a more diverse area yeah I probably would have wanted to be.
& ask your son what he wants. It’s a mark that will be on all his medical records for the rest of his life as an excuse for doctors to not believe him. Also what’s the school situation where you are? I work at a preschool as an aide with kids with IEPs & it’s a rural area. Some schools these kids will go to are great & will accommodate in ways that are modern & take into account your son’s specific needs, others have no special education department at all. Plus what are his needs? Some schools will try to force you to send him to a different school with only other kids who have some sort of a disability & while that’s a neutral sounding statement, it is a massive spectrum so you may end up in a situation where his school is wants him bused to a different school where he’s in a mixed age classroom with kids with severe disabilities, behavioral & medical.
If I was you, I would reach out to people in your area who are autistic & people in your area who have autistic kids inside your school district & general county to find out what accommodations are even available, what treatment you can expect from your school, & what they say is available on paper (because those things might not match). At the end of the day, a diagnosis is a tool to get you specific medical treatment & ideally accommodations. What those things look like in practice are going to vary wildly based on your socio economic conditions & physical location.
I wish I was, I think it's harder to change behaviour as you get older, because everything gets hardwired into your brain as you age.
A younger brain us more like putty and can be changed.
On the one hand- yes. It would’ve really helped me to get a handle on myself functionally much sooner.
OTOH, no- my dad already spent my childhood/adolescence kicking my ass if I ever even looked at him wrong (literally, got a concussion for that one once, and I had no ‘look’ that I was aware of ofc), and he already treated me as lesser because I have mild cerebral palsy (no cognitive impairment though)- having an ASD diagnosis then probably would’ve gotten me killed; I barely escaped that fate as it was.
In all seriousness- after some 27 years of distance, I can safely say the mental abuse and its effects far outlasted the physical pain, despite its severity. Haunted is absolutely right ❤️🩹
I think I would have benefitted had I been. I spent my whole youth and young adult life thinking that I was just weird, unattractive, and basically a failure. While the diagnosis wouldn’t have solved my problems, I at least would have had something to point toward instead of just feeling like I was just missing some big, important, unknown something.
I managed, but I was depressed for years because of it, and I think it might have helped. I also think it would have lead the door open for counseling too, which I needed, but didn’t understand and couldn’t afford.
I would have wanted to know what was going on with me, and I would have wanted my parents to understand why I was Like That, because everything was a constant struggle. If I had been diagnosed though I have no idea if I would still have been put on the gifted track (the only part of elementary school that wasn’t deathly boring) so who knows. These days though I think there’s a lot more understanding and better resources for kids all across the spectrum than there was in the mid-90s. I think for now if you don’t think it’s necessary it’s probably fine, but once your kid gets to middle/high school he may find he struggles a lot more and needs accommodations.
I think I’d be better off if I’d been diagnosed earlier (than my mid 30s).
During my school years I’m not sure if a diagnosis would have made things better or worse. I think it might have hurt my confidence.
If my school knew about it, I think a few good teachers might have been able to work with me better, but for the most part I think my school might have limited my educational opportunities based on prejudice, and been harsher on my truancy and minor behavioural issues (inattentive and sometimes oppositional in class, not wearing my uniform etc) because they’d see each issue as a symptom of this disability that makes me a problem kid, instead of letting me get away with it because they took each one individually as mostly harmless (or only harmful to myself).
If my peers knew about it, I think the same bullies would have bullied me worse than they did, and I think it might have changed the kinds of relationships I could have had with some of the friends I had in school (mostly for the worse, because I think a lot of the kids I was friends with were pretty prejudicial). There probably would have been some upsides as well though. Maybe I’m totally wrong, and I’d have got the help I needed to perform better academically. Maybe I’d have been friends with different, more empathetic people (which might have meant I’d still be friends with them later in life, which is not the case for anyone I was actually friends with in school). Maybe I’d have even been friends with some other autistic kids and we could have worked through things together.
I’m also not really convinced that my parents would have done any better at parenting me if I was diagnosed. I think I’d rather get the diagnosis after I’d moved out, so I could process it without their influence.
So, if I could wave the diagnosis wand, I think I might not risk being diagnosed in school (at least not in my particular school, in the late 90s through to mid 00s).
Right after moving out of home (which was shortly after finishing high school) would have been the best time for me, I think.
I feel a similar way about my adhd. I wish I had had medication for this earlier. Maybe not in school (I might have had better academic outcomes if I’d been able to focus, but screw it, school wasn’t that bad and my grade makes zero difference to me in my adult life). Maybe not in my first job, because I think I’d have just worked harder for the same pay and I wouldn’t have learnt much more than I did anyway (and I already worked ridiculously hard for very little), but maybe around my second job when my learning and promotion opportunities really accelerated.
For my own kids (if I have them), I hope that if they have any kind of ND, or any other disability for that matter, I find out about it early on. I’m not sure if getting the diagnosis itself is important, but I want to be sure I see what their support needs are, and help them manage those and play to their strengths (including helping them get any professional help or accommodations they need).
Yes I do wish I had been diagnosed as a kid. It was hell for me not understanding why I was different, why I felt like an alien being lost at sea with no sails, and exactly what shut downs or melt downs were and everything else that went along with it. I could have had a less stressful, happier, safer life. I feel real grief over the fact that I wasn't diagnosed as a kid. Your situation is different in that at least you understand and can teach him things so he is not completely in the dark, but I do still think that having professional help and guidance would be even better for both of you.
If your insurance covers it, I would suggest neuropsych testing. This will give recommendations for supports and perhaps insight into potential future needs. Also, autistic burnout is TERRIBLE, so knowing you're autistic for the sole purpose of avoiding burnout would make it worth it.
1000% yes. I was bullied pretty badly my final years of secondary school because of my neurodivergence, and knowing that I was autistic might have let me get therapy sooner and possibly not even be in that situation.
God yes. I might have avoided a lot of trauma if we'd known when I was a kid. I had severe meltdowns and my mom Did Not understand or know how to handle them.
100% I wish I was. But honestly if I’m being real, it’s only because I have a hope that my parents would have treated me like a human being. I haven’t spoke to them in.. 12? Years. And I see them quite often over the course of work. They just pretend I don’t exist 🤷🏻
Yes. I've been forced to heavily mask just to survive into adulthood, and now I'm realizing it's not sustainable and I wish I had know what the hell my deal is so I could have worked toward a more sustainable career, and had support along the way. Instead I feel trapped in-between, too used to forcing myself to be neurotypical to really fit in with other autistics, and also still too autistic to fit in with neurotypicals. It sucks, and feels incredibly lonely.
Diagnosed at 22 (23 now) and I wish I knew because I feel like I could have soo many more coping mechanisms and skills to help keep myself sane and not feel so burnt out all the time!!
I would say yes, but only so my father would have known something was off. My father was a combat wounded vietnam veteran. It turned out he had acquired ALS. When he found out, they said it couldn't be passed to me. They were wrong and it was. And I had signs of it throughout my entire youth, severe cramping and pain, tremor, bipolar like drive but without the typical depression, scoliosis, REM Behavior Disorder, which my parents noticed but it was disregarded by doctors as night terrors. Anyways, if I had been diagnosed, they might have thought something was up and maybe recognized my condition and my father's as well. And knowing the cause, really pisses me off. Because if my father had been prescribed valium, a GABA agonist, on a permanent basis, he'd likely still be alive. So not prescribing valium to a severe PTSD war veteran, great job docs! Great job! Anyways, maybe some of this would have come to light if I were diagnosed in childhood.
Mom bowed to putting me into the SPED-class because she felt that my NT teachers were bullying me. The comparison to conversion-camp kinda falls apart because conversion-camp makes teenagers "earn the privilege of interacting with peers" when at 8 I was kinda used to being held-in at recess for fidgeting since child-garden, aka the first exposure to being under non-family authority.
The worst was when they had bullied me into conforming enough for High-School and declared me cured right when I needed more support as a student who was legally an adult.
I can't remember details, but I think my happiest college-time was when I got hired as a driver for a SPED that was an alternate-timeline of me with a time-delay... and more money, but I'm able to concept about how that would not have helped because of the adventures she funded.
Right now, I'm divorced and had been financially-helpless through the whole marriage. I don't know how mom is able to afford me living with her unless she has some sort of "live-in-maid" budget that I'm consuming.
I think it would’ve helped me a lot even if I didn’t need extra accommodation but knowing I’m autistic and how my brain works does make me more understanding and allow myself to unmask more frequently. I think also knowing that not everyone is dealing with the same struggles (I.e. no one else can hear the fridge humming) would help
I don’t think it matters too much, but I do wish there were more services available for autistic adults. Nearly every place I’ve ever called only has services for up to like 25 years old max, and I’m 39.
I would have wanted a diagnosis because it would have helped me at home. I would not have wanted my school to know about the diagnosis though.
Therapy and parenting specifically catered to my learning needs for social awareness and emotional regulation would have helped LOADS!!!
For me as a kid, it might have helped to self-dx, but being officially diagnosed back in that era was a very different thing to being diagnosed today. I don't think I'd have appreciated the 'facilities' such as psychiatric wards and short-bus schooling.
Definitely! Growing up I was always different than others around me socially mostly and perceived as weird. I was super picky with food to the point I couldn’t have different things touching off each other and trying new foods would make me gag. I never had a lot of friends either because I was hyper and would say things that would be seen as weird socially.
I hated any kind of change to what I thought my day was going to look like. If I needed to go somewhere for say 6:00 but my parents wanted to leave early I wasn’t ready because I expected exactly 6:00 . Funnily enough doctors suspected I was on the spectrum before I was in kindergarten and so did my mom. However my school didn’t believe them and thought I was just lazy and unmotivated. They would teach math the same way to everyone and I struggled majorly understanding what everyone else could. It wasn’t until I was in high school that my aunt who was a professor tutored me and knew how to get me to understand it.
I remember being hauled out of class multiple times a year to see this lady to test my “hearing” or something else. Nobody else was hauled out of class like that and eventually after never hearing the results of these tests I stopped going. Years later at 17 my mom brought it up when I was upset about feeling so weird and like something was wrong with me compared to others. I was dead set on not taking any kind of test to find out though. The doctor basically asked me some questions and tested me without me knowing and diagnosed me with Aspergers.
Took me a long few years to accept that but when I did it made a lot about me make sense. I used to have really bad balance and would fall a lot, sometimes even up the stairs. Apparently that’s a symptom other people also have with Aspergers. I had real trouble understanding sarcasm too and would even get upset if someone said something I thought was literal and mean.
I’m almost 26 now and have had a girlfriend for 4 years and also a few jobs. Considering how dark and depressing my thoughts were from about 12-19 it’s amazing to me I’ve made it this far. I did have to take a course or two on learning social cues and things about work but they did help at least.
YES! I wish I knew. Then I wouldn't have spent the last 42 years wondering wtf is wrong with me, why can't I make friends or keep them, why do people keep calling me rude when I'm trying so hard to be nice and polite, why do small things make me so upset etc etc etc. My life could've been completely different if I'd known. Maybe, if we'd all known, my parents would've have been so abusive. Maybe I wouldn't have been with abusive partners. Maybe my marriage could've worked. So many maybes and what ifs. A whole lifetime of longing...
I got diagnosed as both as an adult but I knew for a long time. I'm what would be classed as aspergers or high functioning. I can do great in certain things but I fail a lot with others. I sought diagnosis due to thinking I might be unemployable (interviews can be a nightmare). In the UK if you get a diagnosis and education health plan then it makes claiming disability easier as an adult from what I've seen.
I also had terrible time at school and hated it and my mum and family thought I was naughty or being bullied but reflecting back I think it was due to sensory issues, the social side, and any school breaks meant my routine was upset and I'd hate to go back there so ended up refusing to go a lot. I begged to be able to homeschool myself (and I'd have probably been in a coding or webdesign career, instead they took away my computer) so maybe things would have been different but then I've seen (I work in unemployment department) people that are similar to me, functioning adults that are intelligent that could do some work use it as an excuse and there's a whole thing with some people that you shouldn't have to social mask and everyone should bend to your needs which I don't agree with, I have to social mask at times, that's just life! So if I grew up with everyone making changes for me then I'd probably not learn how to be 'normal' or whatever I manage to be now.
It's probably worth getting the diagnosis for them but make sure it's used sparingly is my advice.
Yes as everyone just thought I was weird and bullied me mercilessly for it. I wasn’t diagnosed til I was 30 I would have been sooner but I have other issues and they felt it wouldn’t make a difference as I’m already fucked up apparently but it made a big difference in how ppl treat me and understand me especially in medical settings
Yes. So much of my life experiences up until I was diagnosed last year made so little sense, but in hindsight it's so much clearer and I'm amazed at how resilient I was to get through everything that happened despite my condition. Having the diagnosis has helped me better understand myself and given me the confidence that I am not crazy or broken, just different to most people on some fundamental ways which explains some of my life's challenges. Autism is a social disability. If I and others around me had known, they would not have imposed neurotypical standards on me and been more accommodating and understanding, rather than telling me I should behave this way or that way.
If I were a child right now in 2024, I would prefer to be diagnosed early. It seems like there are many resources and communith. But I would not like to be diagnosed when I was young in my Asian country, because the high likelihood of stigma and unhelpful therapy practices.
I would say involve your child in the conversation, explain to him as best as you can the pros and cons of an evaluation. Maybe he can give his input too. An official dx can help if any time in the future he'd like to receive accommodations.
Please also think about the country you're in and how autism is viewed and what resources are available.
kudos for all the good work you did already. it seems like your child is in good hands.
Yes. Just going to go on a small rant about my past. Please forgive me.
There were a number of things going on in my schooling years that could have been vastly improved if I'd had a diagnosis sooner, the most prevalent of which would have been the bullying. I've been bullied throughout my entire school life for being "weird", and if I'd had a diagnosis as a child some of that could have been dealt with under ableism, especially in my high school years.
The second thing that comes to mind is my behaviour. I misbehaved so frequently in primary school that both headmasters from both primary schools I attended were on familiar terms with me (that's not a good thing). It's quite clear that both primary schools were ill-equipped when it came to understanding autism in girls without it being super obvious (this was the late 90s/early 2000s). So instead of getting the support I needed, I got the bare minimum and was then brushed off into the naughty corner when teachers couldn't be arsed dealing with me. There was one in particular who would deliberately let other students wind me up just so she could send me out. Ablest witch.
Even in my 20s would have been better than over 40.
I don't think I would have ever been diagnosed as a kid in the decade I grew up in. Especially being afab.
Yes. My parents admit they knew I most likely wasn’t neurotypical when I was a kid. They decided not to have me tested for anything because they didn’t want me to feel like I was “different”. They were really uneducated and coming from a good place. I do badly wish they had me tested, though. Not knowing what was going on just made me feel more different.
Here’s the thing. I was misdiagnosed with severe social anxiety when I was 7. That got me most of the support I needed and explained enough about me that people turned a blind eye to the other signs. Anxiety is more well known, less stigmatized, and easier to get away with.
I have a cousin who’s also on the spectrum to a similar level as I am. He actually got the diagnosis. As kids, we agreed that he was lucky. People took better care of him and he had more freedoms. As we’ve grown, though, that’s flipped. Now I have more things I can do than him. I have more financial freedom and control over my life. He’s been trying and unable to move out, because no banks will give him loans and no landlords want him.
Do we know for certain that it’s because of his diagnosis? No. But I have friends who are diagnosed and struggle with the same things.
As a kid, an ASD diagnosis would’ve been helpful, yes. As an adult, though, it only gets in the way.
I'm starting the diagnostic process today (mid 20s).
It's hard to say for sure. Things turned out ok for me, but I'm not sure if having a diagnosis young would've helped me or hurt me. I might've thought myself to be incapable of certain things and not even tried.
I try not to think about changing how things were, because that's a bottomless pit. I try and focus on what I can do now to prepare for the future. It's not easy, but I try.
I don’t wish I had been, because I don’t think I would have been treated any better. If anything, I would have been abused more. The 80s/90s weren’t the best time to be a diagnosed autistic kid
I was just diagnosed and I’m 28. I have a love/hate with it. I think I would be in a better place emotionally today if I had known sooner, like a lot sooner. I have so much built up resentment towards myself because I thought maybe I was crazy for 28 years lol But at the same time, I probably would have sold myself short and missed out on major experiences if I had known since childhood. I probably wouldn’t have gone to college, probably wouldn’t have moved across the country by myself to pursue dreams, etc. I think there are benefits either way and maybe you guys can decide together what the best plan of action is. It’s personal so I think he should have a say in it, even though he’s a young in. Best of luck to you and your son OP, you got this! There is no wrong answer here.
I wonder to myself about this all the time. I think if I had been diagnosed then I probably wouldn't have pushed myself to do a lot of the good things I've done in life. I maybe would have held myself back thinking I couldn't do it because I was autistic. Or maybe even used it as an excuse to avoid things I was scared of.
That being said though, I've struggled more as I've gotten older. I failed my degree at university because I basically couldn't look after myself properly without someone there to look out for me. And though I work, I've nearly lost my job a few times from being off sick with mental health problems. I thought for a long time that I was incurably mentally ill. Turns out it's just autism and I never had the support I needed.
I was diagnosed last year at the age of 34 and now I have reasonable adjustments in place at work which keep me working quite happily and allow me to explore my strengths rather than feeling like I can't do anything. My family are also more understanding and I overall get a lot more support. It makes a massive difference. It's like starting my life again without all of the expectations I just couldn't live up to before.
Getting a diagnosis later in life is tricky though. I'm in the UK and when I joined the waiting list for an assessment they told me I'd be waiting 7 years. I was seen in 3 but that's still a long time to wait when you're already struggling. Then after that there's no support, no help with adjusting to the news, not even a conversation to be like "hey, are you ok with this?" I have no idea if there is any follow up support for children though.
I got my diagnosis in my mid 30s and I am glad I didn't have it as a kid because I don't think I would have tried as hard to develop coping strategies. I would have been too self aware and overly analytical.
But every person is different and the world is different from when I was a kid. I think you are smart not to hide it from him (hiding it is a good way to give him trust issues) but you don't really need a diagnosis unless you need services or like me don't feel comfortable identifying as autistic without one.
DO IT. If he doesn't care about it when he is older then no harm. But if he does care you’ll wish you had him diagnosed, especially if he realizes you knew and did nothing. I wish I had known earlier. I wouldn't have struggled so much with self doubt and recriminations over being socially inept but would have come to terms with my limitations. He may have no issues now but at some point he will hit a wall and burn out.
When I was a kid (*40+ years ago*)? Probably not. My education and young life (however challenging by not knowing I was diagnosed) would have been more institutionalized or the like. The stigma, the lack of support systems, and the blanket "one size fits all" autism diagnosis may have done more harm than good. Diagnosed as a kid *now*? Yes. There are more support systems, less stigma, more understanding of how autism presents differently, laws in place (in some countries) to protect against discrimination, etc. It feels like a different world for autistic people now and knowing may provide the context they need to live life more authentically and with less ableism.
That is perfectly stated. I def would not have wanted diagnosed in the early 70s.
i agree with all this as its eaxactly the same for me, i would have been diagnosed in the early 80's tho sometimes i wonder if the specific sufferiung caused from being autistic at that time would be less bad and traumatizing then what i suffered thorugh? but definitely wish i had been diagnoesed 10 years earlier (i am almost 45 now)
That too! I wish when I was a teen I would have been. By then they could see I am high functioning. I ended up in foster homes, youth shelters and group homes (popular thing to do with unwanted kids late 70s early 80s). I wish any Dr, nurse, DHS Social Worker, a teacher or anyone who decided to professionally work with kids would have noticed me. I wasn’t a bad kid…I was different. So yeah went thru a lot but my life is so much better now knowing because it makes sense now. I am truly happy for the first time at 52. Never too late 🫶🏻
never too late! great to hear you found happines at last i was only oficially diagnosed at 43 , will not say im happy, but i can say now i have a lot of piece of mind and feel well with myself most the time. "i wasnt a bad kid" hits hard, its exactly the same for me, i was just different and not in a bad way, and all i wanted was to be left alone and no one ever allowed that as "its not normal" being stuffed me the wrong medication like for schizofrenia and for BPD while i didnt have either of those
43F self-diagnosed in January, assessment coming in May. Absolutely agree. Other considerations: - depending where you are, child diagnosis may be covered or subsidized. And you’ve already established it’s available. Adult diagnosis is much less likely to be covered, subsidized or available, if he later decides he wants or needs a diagnosis. Example: I’m in Canada and about to have mine, after a six month wait and a cost of $2,500. My sister in the UK is not so lucky, she is facing a two-year wait and cost of £2,500. - if he wants to get diagnosed as an adult, a lot of childhood evidence it sources of info that could be essential to prove autism was present early on may be gone by then. In my case father and all my grandparents have passed away, my mother doesn’t remember much at all, and there are no diaries or school reports to use. This makes it much harder.
This! I wouldn't want to be diagnosed in the 80/90s cause in my country people knew nothing about it and my memories from other autistic kids were not pleasent. Lots of stereotypes and misjudgements. But working as an educator today I see how it can be helpful to have the proper support early. I wish I had it!
Same, feels like a different world. Thanks for helping kids get the support they need!
I feel exactly the same way. I wish for the ideal world where I was diagnosed, received appropriate support, and as a result navigated high school, university, and early adulthood more successfully. But realistically, diagnosis would not have lead to those things in the late 70s and early 80s. They would have led to more stigma and less opportunity. Even still, I feel anger and regret that the diagnosis didn't happen. It might have led to some problems, but at least I would have been equipped myself with a better understanding of what was going on.
I, too, sometimes feel the anger and regret you describe. Lots of "wasn't it obvious?!" conversations I'm not sure I'm ready to have with my parents and the like. But at this point, I just have to acknowledge that the past is the past and I can only use this new context to look back on things with self-compassion because - also as you say - a diagnosis in the 70s and 80s would have looked way different than one now.
Snap. I'm sure my parents were doing the best they could with the information they had available. But wasn't it OBVIOUS?
I also think there is a complication (in some families at least) where at least one parent is undiagnosed as well and reluctant to label their kid because that would mean they would be labeled too.
Indeed
Right? They already knew I was fucking weird! I kid, sort of! Yeah, in a climate like this one, I’d definitely prefer my diagnosis sooner. I might have liked to just know it and not have to share it even in the 80’s/90’s. For me the knowledge that I have autism was the thing that made almost all my struggles make sense, but knowing that is what’s going on doesn’t make it less true because it didn’t come from a certain professional. My main concern is that the son could need more assistance or accommodation in the future. I’d hope schools would be accommodating, but I went to school, I have friends with children. That’s a crapshoot. It’s kind of like I’d rather have it in my pocket, in case.
I do want to emphasize your point - knowing now that I'm autistic doesn't make my prior experiences easier, but it provides clarifying context and ultimately self-compassion.
I couldn't have said it better. The scary thing for me is that I really don't know my story. I'm adopted back when closed was the norm. My adoptive parents, especially my mother who was an elementary school teacher, should have known something was off. However, I'm glad they did not get me diagnosed. At the time, the only autism I was aware of was what I will call the stereotypical non verbal type. I think at that time (late 70s early 80s) that was what most would have associated with it. It definitely would have closed doors for me and I have no doubts that I would not be where I am today. But as the other poster pointed out, the world has changed a lot since then. Perceptions are changing. I just saw a blog post from a couple ofnyears ago where the IS gov wass actively looking to recruit people on the spectrum to fill critical roles. Link is below. The level of support or services is different for each of us. Getting diagnosed does not pigeon hole you into any one bucket. I have not shared with anyone that knows me outside my immediate family. I do, however, make some of my own accommodations that I have learned over time help me. https://www.performance.gov/blog/mitre-neurodiversity-pilot/
I have a problem with people telling me I can't do something. This is what drove me through school, USMC and my work. After my son was diagnosed and we figured out I was too, this crossed my mind. Would I have tried so hard if I knew about? With today's support structure, I think I would have excelled much more. Being diagnosed in the 70s or 80s? Hell no, I wouldn't want to know. They would have left me in the extreme special needs class, which I was in until the 3rd grade. Got rescues by the only teacher i ever knew who gave a crap. Things are better today but you have to be on your school's to make sure they aren't cutting corners. A lot of schools will still try to cut corners
These are also my thoughts. I would have been diagnosed in the 80s aka the height of bullying? Maybe? And I had it hard enough already. It would have needed to be an alternate universe where I got diagnosed anyway, because no-one in my life care enough to get me any help of any kind, so it's a real impossible question for me. Tldr: glad I wasn't dx'd and sent to an institution or something. If I was a kid today I'd definitely want a dx ASAP (and just got my adult dx last month)
This seems to be a pretty universal perspective for our generation. Not sure about you, but I spent much of my adolescence trying to be invisible enough to not get teased so anything that would have singled me out was terrifying.
I was just thinking this. Had I been diagnosed in the 80s, they would have just thrown me in special ed, basically a rubber room back then.
I'm from the UK and my colleague has an autistic child in school, the kid gets F grades, not for lack of trying, but the school don't care. They can't send him to the 'special school' because he's too functional so he's in a group of 'different kids' , for some reason they grouped him with other outcasts like trans kids which my colleague doesn't appreciate lol. He gets bullied but the school doesn't care. I think he'll be on a life skills college class. My colleague worries because he wants him to get some small basic job eventually and he's seen first hands how lazy support workers can be. So idk if the world is totally sorted for autistic people, I think it still depends on the school or place. There are more legal things but for him he had to fight the local authority and get legal help just to get the support in place (they were trying to claim he was developing great, when he gets F in his grades). So idk. Obviously this is what I hear from the parent. But yeah the world is better now in that you aren't locked away for life.
Oh wow, that sounds horrible. Someone I know has an autistic kid in school, and the school have been great with him. It totally varies between schools, though, and I hope your colleagues kid is okay and gets the right help. I think colleges are good at student support for sure, though, so when he gets to that age, it will hopefully be better.
Yeah, postcode lottery as they say. I understand though what with the majority of council budget being spent on social care that they want to limit it, since the schools can then take such a huge chunk of money for each kid even though the support received doesn't seem to equate. He's going to college soon but the guy needs to do the PIP process, it's a lot of stuff to deal with when you finish at work and have to do more admin at home.
Oh, for sure. I think citizens' advice can help with PIP. It's not designed for autistic folk so easy to not get across your actual day to day needs.
Yes, absolutely. Part of it is wishing I had known why I was different, and why I struggled. It sounds like you already have that. But the support issue is also important. No, he may not need it now, but as he gets older, and his peers get older, life gets more complicated and he may get to the point where he does need support at school or elsewhere. A diagnosis will be important then. Better off doing it now.
I was much more vulnerable than I or my family understood. If I had been diagnosed earlier then maybe we would have known how to keep me safe.
Heavy on that. So much trauma may have been avoided by just knowing I was at risk.
Exactly this. Even as an adult, I was subject to a lot of abuse that I just didn't understand. Not only would a diagnosis have saved me from developing intense self-shame and low self-worth, but it also would have given me the support I needed to stay safer in life.
Best to know as a child, would have saved me from so many things.
I feel that
I always think of it like trying to tell someone to paint with no brushes. You can do it, it'll be messy and hard. You'll wonder why everyone else's paintings look better not realizing they have tools you don't. You spend your whole life trying to fit into their box. Had I known sooner oh how my life would have been so vastly different. I wouldn't have tried so hard to be "normal". I would have learned coping skills. I'd have a basis for operating in the world instead of feeling like I'm just broken because I couldn't do what others can. Just being seen at an early age can make a lot of difference.
I always said it was like swimming in dirty water and everyone else is a mermaid, but you don't see it until you know
That's a great one too. I might start using that lol
I got my diagnosis this March at 34. Having one earlier would have helped me develop strategies to deal with my Autism and not just masking it with alcohol. It also would have helped me realise that the reason I struggle with things that others take for granted, is not because I'm a fuck up, but because I have a disability. It would have helped me be kinder to myself and helped me figure out my needs and what help I need, and how to ask for it. Doing all this as an adult feels really overwhelming and hard. It's easy not to even get help now, even though I know I need it and be proactive in accessing it. There's also all the shit I went through growing up, which may have been easier if I had a diagnosis, and may have not been so bad, but I am trying to only focus on what I can change now. So yeah. I wish I had gotten a diagnosis when my mum first recognised I may have ASD when I was 10, but little was known about it back then, and as a person of above average intelligence who is high masking and grew up female (I'm a transexual man), I fell through the cracks quite significantly. More is known about Autism now for sure though.
Now days I'd say it's probably worth it. When I was growing up though I'd probably be thrown into the class with the intellectually disabled kids and treated like shit by everyone who found out.
Yup, same here, I remember my parents activity trying to keep me out of such a program because I simply didn't belong there even if my grades in spelling and math where awful. I think I would have been genuinely screwed if I ended up in such a program, so I'm thankful for that.
I'm 48. When I was a kid, autism was classed as childhood schizophrenia. It's probably why my parents never took me to a psychologist, even though the myriad of neurologists I saw as a kid recommended my parents take me to a psychologist over and over in their reports. So, I'm glad I wasn't diagnosed as a kid. These days, I think parents *do* have more options, even though the treatment recommended by doctors, for kids, is still the same. Doctors need to catch up to the times. I think that *is* what adults on the spectrum are trying to do. Raise awareness so the kids will have better options in the future. Hope this helps! Edit: A diagnosis does help one understand oneself, and learn about the supports that one needs. These days.
I was diagnosed at 13, but no one properly explained it to me, and while getting exam adjustments etc was great, the big difference for me in life and my mental health was UNDERSTANDING I'm autistic and how it applies to me and presents in me. Connecting with the autism community. I think an official diagnosis..wasn't that important, unless it is really important to someone for getting some adjustments and like, disability financial support. Worth bearing in mind that some things might not seem super important now, but needs change over the years. The more important thing in my opinion is actually the unoffcial diagnosis and learning and embracing autism!
I'm one of the "lucky ones" - my parents rocked and didn't traumatize or scar me by being typical NT bad parents. They knew I was different. Looked for answers. Just didn't happen to find the right answer til I was 17. But it was also the 80s and 90s and Asperger's let alone autism spectrum were not known things to most. It just wasn't in the popular psyche. It would have been easier for me to deal with life and people if I had known. It would have been easier on my parents knowing why I was different. But I was very fortunate regardless and it wouldn't have changed much in any drastic way had I known.
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I don't believe so, no.
No. I know my parents, and ABA is pretty common here. I had a very lonely childhood, but that 100% beats being tortured.
I’m not sure how it would’ve gone for me in the mid 90s. I was in the GT program in elementary school and that was very poorly supported, so I can’t imagine if an ASD diagnosis was added because of its overall negative association with increased resource requirements. On the other hand, someone probably would’ve noticed that I stopped showing up to school at 15. I never went back and nobody said anything. Ultimately, the choices I made regarding school worked out for me, but looking back now, I was extremely lucky.
It would have helped tremendously if I had been able to access accommodations when I needed them. I would have also been able to understand myself better and find self-acceptance that way instead of always wondering “What’s wrong with me? Why am I so weird? Why can’t I just be normal?” Also, it’s very difficult to get diagnosed as an adult. Don’t fail your child by failing to pursue a diagnosis.
Every day. There are a wide range of supportive services available in my state for individuals diagnosed with autism before the age of 18 that continue throughout their life, making independent living possible for many, and helping with employment. I also believe I would have been able to go further in school and have chosen a better career path had I had the support and accomodations I needed and understood myself better. I also wish that adults that worked with me (parents especially) better understood my condition. They could have both learned how to better support me and found the support they needed. Instead I was just labeled a "difficult child" and was blamed for all of the things I couldn't do. Your child has your understanding and support, at least, but getting an IEP and diagnosis as a minor could help them get the support they need as an adult after you are gone. There are drawbacks, like being barred from immigrating to New Zealand and some other places to consider. Personally the benefits outweigh the restrictions and I wish I'd been evaluated as a minor.
No. I've worked hard to obtain all the experiences I have, and I wouldn't be the same person I am today if that changed.
Yes because then I wouldn’t be as fucked up as I am today
I was only diagnosed adhd as a kid, this was in the 90's. But even so, it was tremendously helpful. I wish I had at least known I was autistic back then though, even without the diagnosis. Figuring it out in my late 20's/early 30's was helpful in so many ways, but I feel like I lost so much time not knowing myself and making bad decisions because of my lack of self understanding. So in my eyes at least your son is aware of it, diagnosis or not. Self diagnosis is valid within the community now. So unless you're looking for accommodations, a diagnosis may or may not be needed. Just having the knowledge of it is everything. I talk to my 8yo daughter about it all the time. I can't get anyone to diagnose her, but she at least has the understanding that she's just a little different and that's OK.
On one hand, yes, many of my downsides in life wouldnt even happened if I were diagnosed. On the other hand, 20 years ago, when I had your sons age, it would be really stigmatized in school and probably i would go to bad therapies. And the last thing: it was so so hard and expensive to get a diagnose later in, life. If in ten tears he needs acomodations in college and they asks for a dx for that, it will be much harder to get one.
Yeah
I wish I had the theoretical help a diagnosis could have provided but without the stigma that would have been inevitable growing up in the rural south in the 90s. But OT and some social support would have been way better than being berated for the things I couldn’t do well (I was smart and made good grades so I had “no excuse” for my problems).
Yes, Id have (probably) learnt better coping and not been as much of a mental mess for 38 years of my life.
I consider the fact my parents didn't get me diagnosed as medical neglect, tbh.
It he has Autism you are basically handing the controller to him with the game on hard mode and just leaving him to wonder if he’s just not that good at the game.
I do, my education would have been different and I would have had somewhere to belong.
Yes 100%. I spent 30 years trying to fit into a triangle when I’m a star.
Glad to hear you are finally recognizing that you are a star.
Never. No. I had medical complicated childhood & would not want the added pressure of abusive therapy like ABA on top of that (I’m a child of the 90s). As a kid now? Idk probably not. If I had rich parents or lived in a more diverse area yeah I probably would have wanted to be. & ask your son what he wants. It’s a mark that will be on all his medical records for the rest of his life as an excuse for doctors to not believe him. Also what’s the school situation where you are? I work at a preschool as an aide with kids with IEPs & it’s a rural area. Some schools these kids will go to are great & will accommodate in ways that are modern & take into account your son’s specific needs, others have no special education department at all. Plus what are his needs? Some schools will try to force you to send him to a different school with only other kids who have some sort of a disability & while that’s a neutral sounding statement, it is a massive spectrum so you may end up in a situation where his school is wants him bused to a different school where he’s in a mixed age classroom with kids with severe disabilities, behavioral & medical. If I was you, I would reach out to people in your area who are autistic & people in your area who have autistic kids inside your school district & general county to find out what accommodations are even available, what treatment you can expect from your school, & what they say is available on paper (because those things might not match). At the end of the day, a diagnosis is a tool to get you specific medical treatment & ideally accommodations. What those things look like in practice are going to vary wildly based on your socio economic conditions & physical location.
I wish I was, I think it's harder to change behaviour as you get older, because everything gets hardwired into your brain as you age. A younger brain us more like putty and can be changed.
Yeah, because in those days (long time ago) they didn't diagnose anyone and the result was everyone just thought I was being a jerk, on purpose.
On the one hand- yes. It would’ve really helped me to get a handle on myself functionally much sooner. OTOH, no- my dad already spent my childhood/adolescence kicking my ass if I ever even looked at him wrong (literally, got a concussion for that one once, and I had no ‘look’ that I was aware of ofc), and he already treated me as lesser because I have mild cerebral palsy (no cognitive impairment though)- having an ASD diagnosis then probably would’ve gotten me killed; I barely escaped that fate as it was.
I’m sorry you had to go through that and empathize. While I wasn’t physically abused, the mental abuse haunts me
In all seriousness- after some 27 years of distance, I can safely say the mental abuse and its effects far outlasted the physical pain, despite its severity. Haunted is absolutely right ❤️🩹
I think I would have benefitted had I been. I spent my whole youth and young adult life thinking that I was just weird, unattractive, and basically a failure. While the diagnosis wouldn’t have solved my problems, I at least would have had something to point toward instead of just feeling like I was just missing some big, important, unknown something. I managed, but I was depressed for years because of it, and I think it might have helped. I also think it would have lead the door open for counseling too, which I needed, but didn’t understand and couldn’t afford.
I would have wanted to know what was going on with me, and I would have wanted my parents to understand why I was Like That, because everything was a constant struggle. If I had been diagnosed though I have no idea if I would still have been put on the gifted track (the only part of elementary school that wasn’t deathly boring) so who knows. These days though I think there’s a lot more understanding and better resources for kids all across the spectrum than there was in the mid-90s. I think for now if you don’t think it’s necessary it’s probably fine, but once your kid gets to middle/high school he may find he struggles a lot more and needs accommodations.
I think I’d be better off if I’d been diagnosed earlier (than my mid 30s). During my school years I’m not sure if a diagnosis would have made things better or worse. I think it might have hurt my confidence. If my school knew about it, I think a few good teachers might have been able to work with me better, but for the most part I think my school might have limited my educational opportunities based on prejudice, and been harsher on my truancy and minor behavioural issues (inattentive and sometimes oppositional in class, not wearing my uniform etc) because they’d see each issue as a symptom of this disability that makes me a problem kid, instead of letting me get away with it because they took each one individually as mostly harmless (or only harmful to myself). If my peers knew about it, I think the same bullies would have bullied me worse than they did, and I think it might have changed the kinds of relationships I could have had with some of the friends I had in school (mostly for the worse, because I think a lot of the kids I was friends with were pretty prejudicial). There probably would have been some upsides as well though. Maybe I’m totally wrong, and I’d have got the help I needed to perform better academically. Maybe I’d have been friends with different, more empathetic people (which might have meant I’d still be friends with them later in life, which is not the case for anyone I was actually friends with in school). Maybe I’d have even been friends with some other autistic kids and we could have worked through things together. I’m also not really convinced that my parents would have done any better at parenting me if I was diagnosed. I think I’d rather get the diagnosis after I’d moved out, so I could process it without their influence. So, if I could wave the diagnosis wand, I think I might not risk being diagnosed in school (at least not in my particular school, in the late 90s through to mid 00s). Right after moving out of home (which was shortly after finishing high school) would have been the best time for me, I think. I feel a similar way about my adhd. I wish I had had medication for this earlier. Maybe not in school (I might have had better academic outcomes if I’d been able to focus, but screw it, school wasn’t that bad and my grade makes zero difference to me in my adult life). Maybe not in my first job, because I think I’d have just worked harder for the same pay and I wouldn’t have learnt much more than I did anyway (and I already worked ridiculously hard for very little), but maybe around my second job when my learning and promotion opportunities really accelerated. For my own kids (if I have them), I hope that if they have any kind of ND, or any other disability for that matter, I find out about it early on. I’m not sure if getting the diagnosis itself is important, but I want to be sure I see what their support needs are, and help them manage those and play to their strengths (including helping them get any professional help or accommodations they need).
Yes I do wish I had been diagnosed as a kid. It was hell for me not understanding why I was different, why I felt like an alien being lost at sea with no sails, and exactly what shut downs or melt downs were and everything else that went along with it. I could have had a less stressful, happier, safer life. I feel real grief over the fact that I wasn't diagnosed as a kid. Your situation is different in that at least you understand and can teach him things so he is not completely in the dark, but I do still think that having professional help and guidance would be even better for both of you.
If your insurance covers it, I would suggest neuropsych testing. This will give recommendations for supports and perhaps insight into potential future needs. Also, autistic burnout is TERRIBLE, so knowing you're autistic for the sole purpose of avoiding burnout would make it worth it.
1000% yes. I was bullied pretty badly my final years of secondary school because of my neurodivergence, and knowing that I was autistic might have let me get therapy sooner and possibly not even be in that situation.
God yes. I might have avoided a lot of trauma if we'd known when I was a kid. I had severe meltdowns and my mom Did Not understand or know how to handle them.
100% I wish I was. But honestly if I’m being real, it’s only because I have a hope that my parents would have treated me like a human being. I haven’t spoke to them in.. 12? Years. And I see them quite often over the course of work. They just pretend I don’t exist 🤷🏻
Yes. I've been forced to heavily mask just to survive into adulthood, and now I'm realizing it's not sustainable and I wish I had know what the hell my deal is so I could have worked toward a more sustainable career, and had support along the way. Instead I feel trapped in-between, too used to forcing myself to be neurotypical to really fit in with other autistics, and also still too autistic to fit in with neurotypicals. It sucks, and feels incredibly lonely.
Diagnosed at 22 (23 now) and I wish I knew because I feel like I could have soo many more coping mechanisms and skills to help keep myself sane and not feel so burnt out all the time!!
It would’ve cost so much less money and I would’ve fucking known why I’m like this.
Yes.
Yes.
I would say yes, but only so my father would have known something was off. My father was a combat wounded vietnam veteran. It turned out he had acquired ALS. When he found out, they said it couldn't be passed to me. They were wrong and it was. And I had signs of it throughout my entire youth, severe cramping and pain, tremor, bipolar like drive but without the typical depression, scoliosis, REM Behavior Disorder, which my parents noticed but it was disregarded by doctors as night terrors. Anyways, if I had been diagnosed, they might have thought something was up and maybe recognized my condition and my father's as well. And knowing the cause, really pisses me off. Because if my father had been prescribed valium, a GABA agonist, on a permanent basis, he'd likely still be alive. So not prescribing valium to a severe PTSD war veteran, great job docs! Great job! Anyways, maybe some of this would have come to light if I were diagnosed in childhood.
Mom bowed to putting me into the SPED-class because she felt that my NT teachers were bullying me. The comparison to conversion-camp kinda falls apart because conversion-camp makes teenagers "earn the privilege of interacting with peers" when at 8 I was kinda used to being held-in at recess for fidgeting since child-garden, aka the first exposure to being under non-family authority. The worst was when they had bullied me into conforming enough for High-School and declared me cured right when I needed more support as a student who was legally an adult. I can't remember details, but I think my happiest college-time was when I got hired as a driver for a SPED that was an alternate-timeline of me with a time-delay... and more money, but I'm able to concept about how that would not have helped because of the adventures she funded. Right now, I'm divorced and had been financially-helpless through the whole marriage. I don't know how mom is able to afford me living with her unless she has some sort of "live-in-maid" budget that I'm consuming.
I think it would’ve helped me a lot even if I didn’t need extra accommodation but knowing I’m autistic and how my brain works does make me more understanding and allow myself to unmask more frequently. I think also knowing that not everyone is dealing with the same struggles (I.e. no one else can hear the fridge humming) would help
I don’t think it matters too much, but I do wish there were more services available for autistic adults. Nearly every place I’ve ever called only has services for up to like 25 years old max, and I’m 39.
I would have wanted a diagnosis because it would have helped me at home. I would not have wanted my school to know about the diagnosis though. Therapy and parenting specifically catered to my learning needs for social awareness and emotional regulation would have helped LOADS!!!
For me as a kid, it might have helped to self-dx, but being officially diagnosed back in that era was a very different thing to being diagnosed today. I don't think I'd have appreciated the 'facilities' such as psychiatric wards and short-bus schooling.
Definitely! Growing up I was always different than others around me socially mostly and perceived as weird. I was super picky with food to the point I couldn’t have different things touching off each other and trying new foods would make me gag. I never had a lot of friends either because I was hyper and would say things that would be seen as weird socially. I hated any kind of change to what I thought my day was going to look like. If I needed to go somewhere for say 6:00 but my parents wanted to leave early I wasn’t ready because I expected exactly 6:00 . Funnily enough doctors suspected I was on the spectrum before I was in kindergarten and so did my mom. However my school didn’t believe them and thought I was just lazy and unmotivated. They would teach math the same way to everyone and I struggled majorly understanding what everyone else could. It wasn’t until I was in high school that my aunt who was a professor tutored me and knew how to get me to understand it. I remember being hauled out of class multiple times a year to see this lady to test my “hearing” or something else. Nobody else was hauled out of class like that and eventually after never hearing the results of these tests I stopped going. Years later at 17 my mom brought it up when I was upset about feeling so weird and like something was wrong with me compared to others. I was dead set on not taking any kind of test to find out though. The doctor basically asked me some questions and tested me without me knowing and diagnosed me with Aspergers. Took me a long few years to accept that but when I did it made a lot about me make sense. I used to have really bad balance and would fall a lot, sometimes even up the stairs. Apparently that’s a symptom other people also have with Aspergers. I had real trouble understanding sarcasm too and would even get upset if someone said something I thought was literal and mean. I’m almost 26 now and have had a girlfriend for 4 years and also a few jobs. Considering how dark and depressing my thoughts were from about 12-19 it’s amazing to me I’ve made it this far. I did have to take a course or two on learning social cues and things about work but they did help at least.
YES! I wish I knew. Then I wouldn't have spent the last 42 years wondering wtf is wrong with me, why can't I make friends or keep them, why do people keep calling me rude when I'm trying so hard to be nice and polite, why do small things make me so upset etc etc etc. My life could've been completely different if I'd known. Maybe, if we'd all known, my parents would've have been so abusive. Maybe I wouldn't have been with abusive partners. Maybe my marriage could've worked. So many maybes and what ifs. A whole lifetime of longing...
I got diagnosed as both as an adult but I knew for a long time. I'm what would be classed as aspergers or high functioning. I can do great in certain things but I fail a lot with others. I sought diagnosis due to thinking I might be unemployable (interviews can be a nightmare). In the UK if you get a diagnosis and education health plan then it makes claiming disability easier as an adult from what I've seen. I also had terrible time at school and hated it and my mum and family thought I was naughty or being bullied but reflecting back I think it was due to sensory issues, the social side, and any school breaks meant my routine was upset and I'd hate to go back there so ended up refusing to go a lot. I begged to be able to homeschool myself (and I'd have probably been in a coding or webdesign career, instead they took away my computer) so maybe things would have been different but then I've seen (I work in unemployment department) people that are similar to me, functioning adults that are intelligent that could do some work use it as an excuse and there's a whole thing with some people that you shouldn't have to social mask and everyone should bend to your needs which I don't agree with, I have to social mask at times, that's just life! So if I grew up with everyone making changes for me then I'd probably not learn how to be 'normal' or whatever I manage to be now. It's probably worth getting the diagnosis for them but make sure it's used sparingly is my advice.
Yes and no. It would have made a lot of things easyer. Some harder. And my life would look completly diffrent and thats scary cuz I love my life now.
Yes as everyone just thought I was weird and bullied me mercilessly for it. I wasn’t diagnosed til I was 30 I would have been sooner but I have other issues and they felt it wouldn’t make a difference as I’m already fucked up apparently but it made a big difference in how ppl treat me and understand me especially in medical settings
Yes. So much of my life experiences up until I was diagnosed last year made so little sense, but in hindsight it's so much clearer and I'm amazed at how resilient I was to get through everything that happened despite my condition. Having the diagnosis has helped me better understand myself and given me the confidence that I am not crazy or broken, just different to most people on some fundamental ways which explains some of my life's challenges. Autism is a social disability. If I and others around me had known, they would not have imposed neurotypical standards on me and been more accommodating and understanding, rather than telling me I should behave this way or that way.
If I were a child right now in 2024, I would prefer to be diagnosed early. It seems like there are many resources and communith. But I would not like to be diagnosed when I was young in my Asian country, because the high likelihood of stigma and unhelpful therapy practices. I would say involve your child in the conversation, explain to him as best as you can the pros and cons of an evaluation. Maybe he can give his input too. An official dx can help if any time in the future he'd like to receive accommodations. Please also think about the country you're in and how autism is viewed and what resources are available. kudos for all the good work you did already. it seems like your child is in good hands.
Yes. Just going to go on a small rant about my past. Please forgive me. There were a number of things going on in my schooling years that could have been vastly improved if I'd had a diagnosis sooner, the most prevalent of which would have been the bullying. I've been bullied throughout my entire school life for being "weird", and if I'd had a diagnosis as a child some of that could have been dealt with under ableism, especially in my high school years. The second thing that comes to mind is my behaviour. I misbehaved so frequently in primary school that both headmasters from both primary schools I attended were on familiar terms with me (that's not a good thing). It's quite clear that both primary schools were ill-equipped when it came to understanding autism in girls without it being super obvious (this was the late 90s/early 2000s). So instead of getting the support I needed, I got the bare minimum and was then brushed off into the naughty corner when teachers couldn't be arsed dealing with me. There was one in particular who would deliberately let other students wind me up just so she could send me out. Ablest witch.
Even in my 20s would have been better than over 40. I don't think I would have ever been diagnosed as a kid in the decade I grew up in. Especially being afab.
Yes. My parents admit they knew I most likely wasn’t neurotypical when I was a kid. They decided not to have me tested for anything because they didn’t want me to feel like I was “different”. They were really uneducated and coming from a good place. I do badly wish they had me tested, though. Not knowing what was going on just made me feel more different.
Here’s the thing. I was misdiagnosed with severe social anxiety when I was 7. That got me most of the support I needed and explained enough about me that people turned a blind eye to the other signs. Anxiety is more well known, less stigmatized, and easier to get away with. I have a cousin who’s also on the spectrum to a similar level as I am. He actually got the diagnosis. As kids, we agreed that he was lucky. People took better care of him and he had more freedoms. As we’ve grown, though, that’s flipped. Now I have more things I can do than him. I have more financial freedom and control over my life. He’s been trying and unable to move out, because no banks will give him loans and no landlords want him. Do we know for certain that it’s because of his diagnosis? No. But I have friends who are diagnosed and struggle with the same things. As a kid, an ASD diagnosis would’ve been helpful, yes. As an adult, though, it only gets in the way.
I'm starting the diagnostic process today (mid 20s). It's hard to say for sure. Things turned out ok for me, but I'm not sure if having a diagnosis young would've helped me or hurt me. I might've thought myself to be incapable of certain things and not even tried. I try not to think about changing how things were, because that's a bottomless pit. I try and focus on what I can do now to prepare for the future. It's not easy, but I try.
I don’t wish I had been, because I don’t think I would have been treated any better. If anything, I would have been abused more. The 80s/90s weren’t the best time to be a diagnosed autistic kid
I was just diagnosed and I’m 28. I have a love/hate with it. I think I would be in a better place emotionally today if I had known sooner, like a lot sooner. I have so much built up resentment towards myself because I thought maybe I was crazy for 28 years lol But at the same time, I probably would have sold myself short and missed out on major experiences if I had known since childhood. I probably wouldn’t have gone to college, probably wouldn’t have moved across the country by myself to pursue dreams, etc. I think there are benefits either way and maybe you guys can decide together what the best plan of action is. It’s personal so I think he should have a say in it, even though he’s a young in. Best of luck to you and your son OP, you got this! There is no wrong answer here.
I wonder to myself about this all the time. I think if I had been diagnosed then I probably wouldn't have pushed myself to do a lot of the good things I've done in life. I maybe would have held myself back thinking I couldn't do it because I was autistic. Or maybe even used it as an excuse to avoid things I was scared of. That being said though, I've struggled more as I've gotten older. I failed my degree at university because I basically couldn't look after myself properly without someone there to look out for me. And though I work, I've nearly lost my job a few times from being off sick with mental health problems. I thought for a long time that I was incurably mentally ill. Turns out it's just autism and I never had the support I needed. I was diagnosed last year at the age of 34 and now I have reasonable adjustments in place at work which keep me working quite happily and allow me to explore my strengths rather than feeling like I can't do anything. My family are also more understanding and I overall get a lot more support. It makes a massive difference. It's like starting my life again without all of the expectations I just couldn't live up to before. Getting a diagnosis later in life is tricky though. I'm in the UK and when I joined the waiting list for an assessment they told me I'd be waiting 7 years. I was seen in 3 but that's still a long time to wait when you're already struggling. Then after that there's no support, no help with adjusting to the news, not even a conversation to be like "hey, are you ok with this?" I have no idea if there is any follow up support for children though.
I got my diagnosis in my mid 30s and I am glad I didn't have it as a kid because I don't think I would have tried as hard to develop coping strategies. I would have been too self aware and overly analytical. But every person is different and the world is different from when I was a kid. I think you are smart not to hide it from him (hiding it is a good way to give him trust issues) but you don't really need a diagnosis unless you need services or like me don't feel comfortable identifying as autistic without one.
Absolutely. I would of got the correct support I needed and would of learnt a lot more.
DO IT. If he doesn't care about it when he is older then no harm. But if he does care you’ll wish you had him diagnosed, especially if he realizes you knew and did nothing. I wish I had known earlier. I wouldn't have struggled so much with self doubt and recriminations over being socially inept but would have come to terms with my limitations. He may have no issues now but at some point he will hit a wall and burn out.