If I was ever autistic…. I outgrew it

[Finlandia86]

So to start off, let me say that I am far from ignorant about Autism, I have studied it at length and I know it is a condition present from birth / very early childhood and is not something you can outgrow.

Having learned a lot about Autism, including its presentation in girls, I look back on my childhood and see that I had a whole load of traits, including:

• Difficulty distinguishing fantasy from reality, especially as a young child
• Long running obsessions as a tween and teen (characters in books and TV shows mainly, to the point where it would interfere with my life and I would secretly pretend I was them…see above)
• Fixations on certain people in real life (usually teachers).
• Social difficulties - being thought of as aloof and stand-offish when actually I was shy and didn’t know how to ‘be’.
• Avoided showering (couldn’t be bothered and didn’t see the point).
• Sensory seeking (chewing stuff all the time, humming all the time, tendency to jiggle/rock in my seat)
• Difficulty with eye contact (shyness and low self esteem)
• Difficulty organising myself and terrible procrastination, until hyperfocus kicked in (after days of tears)
• Black and white thinking about right and wrong / good and bad, and giving myself an extremely hard time because of this.
• Lots of examples of supremely cringy behaviour, because I didn’t understand how I would look to other people.

If I was a teen today, pretty sure I’d get a diagnosis.

But… at nearly 40 years of age … I have grown out of all of it.

Okay, not quite all. I am still a terrible pen chewer and procrastinator (although my hyperfocus superpower seems to have left me). But the rigid fixations and the social awkwardness… gone. Gradually, it has to be said. It took until I was about 26 to truly grow into myself and find my social confidence, and it was around then that I stopped fixating on both real and fictional people, which I think had a lot to do with finally developing some self-esteem. You’ll be pleased to know that I now shower daily.

I’m not sure where I’m going with this, as I imagine a lot of people will think I am trying to invalidate their diagnoses or those of their children… I’m not. But I guess I am wondering whether we can be a bit quick to diagnose ‘low support needs’ / Aspergers type autism, when actually it’s just a case of ‘quirky child’ / ‘immature teen’.

Or, I guess a different takeaway could be one of hope: that as a probably autistic person I have learned to navigate and overcome many of life’s difficulties by middle adulthood.

I suppose my question is whether anyone else can identify with my experience, and if anyone has any interesting thoughts about it.

Umm - I was you - and then the wheels came off mid-forties and I was ‘worse’ than I’d ever been in my teens.

I don’t know if you’re a parent - but (looking back) in my 20s/30s/ early 40s I felt a lot of pressure to ‘perform’. Perform = be normal.

With my kids being older and my financial situation more secure, I’m relaxing. Relaxing, it turns out, is spending days at a time in obscure solo interests, flapping my hands, being sensory-grumpy and radically reducing my socialising.

I don’t need to be diagnosed, but I supported my childs diagnosis. What’s different between me and her…?

I spent most of Y9 home on the sofa with ‘stomach aches’ - school won’t accept that now.

I got constantly told that I was ‘moody’ and ‘eccentric’ - we have better words for that now.

I spent literally all summer alone and missed nothing socially - teens are ‘always on’ now.

That example was relating to 1 or 2 students in a class I’m thinking about in particular. Last year I taught a whole class of learners with autism. I have taught hundreds upon hundreds of learners with autism. I would describe my experience as extensive. As a result, I have learnt that it is extremely complex and what suits one person doesn’t suit everyone. It is arrogant to suggest otherwise. I don’t judge people based on their individual decisions and choices. You shouldn’t either.

Do you really think you don't have to tell anyone as an adult. Dvla, insurance, job applications just of the top of my head. Then also anytime you walk into a medical setting for the rest of your life you will be treat different. Iv almost died twice from physical problems that where initialy missed and blamed on mental health due to my medical records. Also you will never be listened to or taken seriously when talking to health professionals. There's been studies done on this stuff the university of Cambridge did one a couple of years ago that people with learning disabilities/autism/mental illness have poorer health care and poorer outcomes then the rest of the general public.

I don’t think anybody should aim to never judge people based on their individual decisions or choices. That is a ridiculous suggestion.

I think you not judging people is pretty debatable. You seem to have pretty fixed and judgemental opinions on several issues- particularly re young autistic people.

I’ve wasted enough time on this today. As I said several hours ago, I fear it wouldn’t matter what I said as you had fixed ideas. Turns out I was right on that front. I’ve tried to be reasonable with you, but there really is no point trying to reason with the unreasonable. You have tried to invalidate several other people’s lived experiences and I haven’t got time for that. I genuinely hope you find the support you and your family need.

Ditto, we do thanks. You have pretty fixed ideas yourself .Re invalidating. It wasn’t me accusing autistic young people of using it to get out of anything uncomfortable.

SOME young people, and I gave an example further down which you conveniently ignored. Go and focus your aggression somewhere else more productive.

Some- whatever! Any young person living with autism is uncomfortable day in and day out. The comment was offensive.

https://www.telegraph.co.uk/news/2024/07/20/severe-autism-can-be-reversed-groundbreaking-study-suggests/

Story out yesterday

Study done on 1 set of twin girls who are 4 years old!😂

Interestingly bar the Mail and Telegraph doesn’t seem to be much info anywhere else .

Apparently all our kids can be cured by a gluten free diet and vitamins.

“Dr D'Adamo added that symptoms were unlikely to return over time. He said: 'Symptoms that could return might be more along the lines of things like anxiety, gastrointestinal issues, sensory issues, but not necessarily the behavioral aspects of autism.' “

Okaaay🤔

@B33sandTr33s

But I can believe that drs get it wrong because my DDs dr did! She was diagnosed with severe non verbal autism at just shy of 3 years old. By 4 she picked up language, turned out to be incredibly bright, struggled socially but through the years has learned how to manage as a square peg in our round pegged world, fully independent, happily married as an adult. She had early intervention with aba therapy from 2.5 I wonder if this made the difference but can't prove it. 4 is way too young to make any pronouncement anyway!

What I do suspect is that children are being diagnosed with autism who actually have mental health issues, or who are simply immature socially for their age because their parents are anxious and want a "cause" for the school forms. My gp friend says the private clinics he has dealings with have 99% hit rates and he says it's because people research what buzz words to say and think that diagnosis can mean extra funding at school.

I’m fully independent and happily married, still late diagnosed autistic.

A diagnosis doesn’t get extra funding in schools. What school forms?

You're not autistic. I was diagnosed in my fifties because when my last relationship ended I realised there was a pattern.... obsession not love, that wore off over time. I decided to remain single for a while and that is when I realised I had been masking my whole life. It helped that I had a son with autism because one of the social workers recognised traits in me. I felt emancipated that I no longer had to force myself into uncomfortable situations socially, that it was okay not to want to talk on the phone. I still have obsessions but not with men which is liberating too. It still follows the same cycle, I will be consumed by something for months maybe years then it will wear off and I find something new. Before I realised I had autism I felt like an inadequate adult, who was a huge underachiever and child like emotionally. Now I have made peace with myself and recognise that it's okay to be me. More than okay, actually. I am happier than I have ever been.

I was waiting for someone to post that study onto this thread when I saw it in the Mail. Boy oh boy, is it a clanger.

It’s not only rubbish because it involves vitamins and is carried out on two kids. The success of the interventions is measured using the ATEC checklist. I just scored in the ATEC questionnaire for DS7 when he was 20 months old out of curiousity and, lo and behold, he would have scored 80.

I haven’t repeated it for DS7 now, aged 7 but, as we were having a casual chat upstairs just now, his score has presumably dropped.

And to think his diet consists mainly of chips and smoked salmon…

I cannot eye roll hard enough.

I am going to try and be careful with wording this as I don't want to cause confusion or offence but it does seem that there are cases where doctors have made/assumed an autism diagnosis because many of the same signifiers (?) are present but in fact some other developmental issue is at the root of it.

I don't know if anyone on this thread has read the (fiction) book "Strange Sally Diamond" by Liz Nugent. When I started reading it I thought it seemed obvious that Sally was autistic but then the consultants in the book said that she was not, she just had developmental issues from her early childhood environment.

More recently I stumbled on an article about this girl and read up about her. I wonder if Sally Diamond had been loosely based on this case. https://en.m.wikipedia.org/wiki/Genie_(feral_child)
Genie was initially assumed to be autistic but actually made noted improvements year by year once in a therapeutic environment, far more than would be possible for someone with actual autism.

So I do wonder that some people have other difficulties that seem like autism but actually aren't, and therefore if/ when they experience "improvement" it can look like growing out of autism when actually there has been something else afoot entirely.

It’s not news that doctors will make mistakes and misdiagnoses are a thing. This is true of every medical issue under the planet.

Bowel cancer misdiagnosed as IBS
Long covid misdiagnosed as Depression
Endometriosis misdiagnosed as Neuropathic pain
Broken bones misdiagnosed as sprains
Scarlet fever misdiagnosed as fifth disease
Brain tumor misdiagnosed as a migraine

the list is endless.

The point is that misdiagnoses happen and what the means is that

• Autism exists
• An incorrect diagnosis of autism later being corrected doesn’t mean that autism has been cured or disappeared or grown out of
• it means the person never had autism to begin with

Speaking as the mum of two autistic DCs, this is very confused.

Autism is diagnosed in the UK in children by someone checking off a tick list of 'autistic' behaviours in a healthcare professional's office where there's reason to believe the child displays the same behaviours outside the office. If the child crosses the critical threshold for behaviours, they get an autism diagnosis.

The child typically comes to the attention of a healthcare professional because someone (e.g. parents, nursery, school) has concerns about their sensory/emotional/social development.

That's literally what it means to be autistic. You tick enough boxes on a form. It's not a disease like diabetes. There's no single mechanism (neurological, genetic or biological) that causes people to tick those boxes.

Given this isn't a single thing, but a set of behaviours observed on one day in a physician's office, then of course some children will stop displaying those behaviours over time. Heck, my DS4 went from having a 'mixed profile' of delays and accelerated development to being 'expected for age' on two different neurodevelopment assessments, carried out by two different people, within about three weeks of each other.

Having looked at the ATEC for measuring "improvement", even the measurement tools are a nonsense. The ATEC mixes cognitive abilities with number of autistic traits, as if they're the exact same thing, and then predicts a child's adult level of disability based on those scores. Given kids adapt to their environment, and smart kids are smarter at this, this is obviously daft.

I'm not saying there's no such thing as autism. There's obviously a constellation of developmental traits that seem similar between people, but there's so many other factors that affect how children develop (e.g. IQ, personality, support at home) that the idea that some things are not autism but look exactly like it, and these not-autism things you can grow out of, but autism you can't is a bit daft.

I should add that the debate in the UK is confused because so much research is done in the US where ABA is the standard of care. ABA teaches children not to display autistic traits that tick boxes on the form - it doesn't teach children the skills to to adapt to their environment.

Thus, US research measures if someone is autistic by "do they tick fewer boxes than they used to do?" This, obviously, doesn't account for whether they're better able to cope to achieve their life outcomes - just whether they look less autistic on a given day in a physician's office.

Very similar to you, OP, I was all the things you listed. Cringe AF. Thing is, I know I am still odd and different, just in grown up ways! We can't outgrow autism but we either learn to mask as a second nature to the point it's natural, or else we are just much less aware of it due to less necessary social conformity being required of a fully functioning adult. That's my guess.
I am married with a family and a home and all the usual, I have the same group of very neurotypical friends after 3 decades of friendship, but I didn't outgrow autism. I have never sought a diagnosis but it's obvious and both my girls are on the spectrum with the youngest needing EHCP and 1:1 TA for all lessons. Interesting points you make, though. There's still so much we don't know about neuroscience. It's fascinating.

I disagree with your point that asd assessment happens “on one day”. That’s untrue. My son was referred at 12 months and was diagnosed at four and a half. There was a great deal of input.

I was diagnosed as an adult. Again, an in-depth process.

The NHS waiting lists mean it’s possible to wait three years between referral and diagnosis, yes. During this time, a DC will likely have two paediatric appointments, a neurodevelopmental and an autism assessment, and part of the autism assessment involves the paediatrician requesting written reports from an educational/home setting.

However, the actual diagnosis is made at one (longish) appointment with a paediatrician.

You’re right that getting an autism diagnosis isn’t a case of going “ooh, you’re autistic” after a 10-minute GP visit, but neither is it some kind of infallible eldritch process that delves into your deepest soul.

We don't get any of that where we are. There are no interim appointments, you're just left to it.

This,..my DC was referred aged 12, hit top of waitlist at 16. Covid struck and at 18, I gave up and went private.

People don't get their kids diagnosed for extra funding.
So your child is autistic but she's now overcome some of language difficulties that she had. That's great. She's still autistic though. Your post is confusing and seems like you don't understand autism.