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.

I was so sorry to read about your experience. It does depend on the school, though, rather than the Statement.

My DS7’s EHCP (what used to be a Statement) pays for his full-time 1-to-1 to help him stay in the classroom, and the school had tried everything else before implementing that.

It hasn’t affected his academic expectations at all. The school SENCO and I have just submitted an edit to the EHCP to remove useless interventions (that the council had copy/pasted), and to include a legal obligation to provide ‘stretch and extension activities’.

I appreciate I’m privileged/lucky that my DS7 has wound up in such a super school, but - for me - having a huge file of paperwork documenting everything from his autism diagnosis to his measured IQ has helped get his needs met.

@Londonwriter thanks. It worked out ok though. Secondary school without the Statemented support was a million times better. My DC is currently at university and hopes to have a career in research.

No you didn't you grow up normal, autistic people do not reach the same developmental phases as NT people.
Everything you describe is normal at certain ages which is why autism is rarely diagnosed at a very young age unless the child is severely affected and sometime late as the person can mask and hit some milestones.
The assessment is based on your age and your development compared to peers.

You are not clever doctors didn't just miss this. You just don't understand how autism is diagnosed and normal child development.

I don't think it's any coincidence that a high proportion of trans people are autistic.

Have you grown out of it or is it dormant? Looking back my ADHD was very bad in my teens(obviously I didn't know it was adhd then). Then in my 20s it was there but I did lots of jobs that complimented my adhd and allowed me to use it to my benefit. In my 40s, menopause causes my adhd symptoms to be raging and worse than over. This isn't unusual.

That's interesting! I did at one point think I could be on the spectrum but I never pursued a diagnosis. I didn't realise it could overlap so much with OCD. I'm not even diagnosed with that either but pretty sure I have it. I briefly dated someone who was on the spectrum and he functioned better than me tbh. Only thing was he didn't drive and I did. Although that was mainly because my parents bought me lessons and basically made me learn as soon as I turned 17 (I was the only kid who didn't want to learn to drive!). I rarely drive if I don't have to now. I feel like the signs, cars and lanes everywhere are too much for my brain to react to quickly enough.

Isn't that just personal preference? Why is being comfortable in big crowds "better".

I mentioned on here over a year ago that an Ed.Psych assessed my son and declared that he "may be autistic" but it didn't matter as he no problems. I agreed. People here didn't believe me that was something that coud be said but it's true.
He didn't talk until he was 4 and was a terribly fussy eater. I could easily have had him diagnosed , and a paed was about to but reconsidered after a Spechie report and said to give it 6 months.
He is now 12yo and in no way autistic.
I worry children are being categorised very early.

Yes. How I explain it to my DS7 is that his brain doesn’t filter out sensory inputs as much as his classmates, meaning he has to process a lot more incoming sensory information. This means it’s easier for him to get disorientated, confused and overwhelmed, especially if lots of things change at once. It’s like being teleported to Mars over-and-over. Everything’s different from Earth, and it’s confusing. However, instead of it happening on Mars, it’s happening whenever he moves classroom.

I was desperately saddened reading @LegoTherapy’s post because, as with my friend who has adapted to living with short-term memory loss due to a brain injury, there are all kinds of hacks to help live with a neurological disability, but it doesn’t sound like they’re doing them. Not even the basic ones.

It’s not a lack of understanding of autism. It’s the opposite. My entire life is configured around managing visual sensory issues that make me feel like I’m constantly navigating a psychedelic star tunnel in a out-of-control racing car, and I do this by making sure I go to familiar places where everything behaves broadly as expected, and/or there isn’t too much visual clutter. Otherwise, I end up not understanding what the heck is going on, because my brain is too focused on someone’s lime green jumper/the neon signage, and I devolve into my “oops, I’m such a funky, fun, weird, dippy person” persona as a way to cope.

What struck me was that I couldn’t understand, for the life of me, why they went with their mum to an unfamiliar restaurant. They’re like “oh, it’s stressful and I was anxious”. It’s like OF COURSE YOU WERE. You don’t have to go to an unfamiliar venue where you haven’t been before, with limited preparation, in your leisure time, with a familiar person who you could’ve asked to go someplace else.

The whole challenge of autism is managing this stuff. I could understand it if you were expected to attend a large compulsory work event, but with your mum? Surely she knows you well enough to agree to go somewhere that poses fewer sensory challenges. It’s like being a wheelchair user, going out with your mum for a quiet meal, and purposefully choosing a venue with no lift, no ramps, and 100s of stairs!

We all appreciate that any disability means not being able to go where you want, when you want, and how you want, but deliberately creating problems for yourself just evokes sadness, not sympathy.

Honestly, it’s like being on a thread about wheelchair use and someone posts “Woe is me, my life is ruined. I can’t leave the house. There are so many stairs,” and you post “well, I have a great life, and deal with this by [insert list of venues with ramps, accessible access, options for accessible cruises, various accessible transport options]” and their response is “you’ve got no idea what it’s like to use a wheelchair.”

Sorry if I got the context wrong, but it leapt out at me, and I was quite frankly baffled! Also sorry that I sound so judgmental, but people posting about their self-inflicted issues doesn’t improve understanding of autism - quite the opposite.

The whole reason why people can seem to ‘grow out’ of autism, despite it being a neurological condition you can’t grow out of, is because so many of us/them subconsciously tailor our entire adult lives around managing our disability. Everyone differs in their freedom to choose career/housing arrangements, and sensory issues/symptoms also vary a lot, but needlessly exposing yourself to uncomfortable situations is neither of those things!!

Really not getting what you’re saying. A wheelchair is a wheelchair. With autism what makes life incredibly difficult is not a genetic wheeelchair but all sorts of obstacles that vary hugely from person to person. Ramps won’t just make everything accessible.

Actually freedom to choose career isn’t that easy when getting qualifications can be hugely impacted, being able to communicate and socialise is important, autism is so badly understood, there are so many obstacles that can’t be sorted by installing ramps….There is a reason so many autistic people are not in work. Of the few that are many will be earning massively below what they should be. I am in a minimum wage job but shoild be earning significantly more, I’m not even sure my daughter will earn enough to pay rent. Her siblings will have impacted careers but earn more as their autism is different. What works for you isn’t necessarily going to work for others.

Saying he might be autistic by somebody not qualified to give a diagnosis alone is not categorising early. He wouldn’t have got a diagnosis as he had no problems and diagnosis criteria have to impact life. You don’t just get a diagnosis you need to meet criteria so nobody would be falsely categorising your child.

Things can also change very rapidly in teens with children who have had manageable traits. Suddenly they can’t manage and there are problems. Childhood stops being so accommodating to autism after a while. The teenage years and adulthood are very different and more difficult. Suddenly autism is no longer so easy to manage.

That’s now how an ASD assessment works. The child has to be seen in a variety of settings eg school and a social setting. Then they attend the ASD assessment centre where they do an ADOS and other tests. There are 2 medical professionals so we had a paediatrician and a SALT. The tests take an entire morning or afternoon. Further informing that are reports from school etc

That is the gold standard of ASD testing done by the NHS or Lorna Wing Centre.

I can only speak about my experience of the NHS does but to suggest that one P was inclined to give a diagnosis - I call rubbish! There has to be at least 2 medics eg P and SALT or P and OT etc

For my son he was under medical care from birth and child development clinic as he could not swallow. The initial thoughts were Downs ( the kept in checking his hand) and then CP finally they wanted to test for MD. He also had the CMV and that was a nightmare every time we went to hospital the pregnant nurses isolated us. Oh and another random thought was lupus when he went blue and cyanotic on his own saliva. Separate to child development clinic and due to the prolonged fits he saw a neurologist who ran the VEP and almost caused me to have a nervous breakdown when he said that global delays were likely. Then the Muscular Dystropy was raised by child development clinic and by that stage I was contemplating pushing my DS and myself in front of a bus .

We moved cities for DH work and we initially had a paediatrician who was convinced that he was ASD when DS was aged 5 . He called in OT and SALT to assesss in schools. Might I add that he was the person who brought it up as we were told they would
be testing for muscular dystrophy next and ASD was news to us. Things were clearly wrong with DS. At this stage as a parent I was exhausted and in a state as you might imagine.

A new paediatrician came on the scene and spoke about a Venn diagram where there were more physical things Developmental motor disorder and language impairment and traits of ASD which would get their own category under the DSM eventually etc. However by this stage SALT has done an assessment in school and said ‘signs of ASD ring Paed to confirm the assessment.’ We had a private OT report done and tried to recruit a private OT to work with DS but you can’t get one for love not money. They were all convinced it was ASD.

Secondary school got involved and said this is ridiculous it’s ASD and wanted a reassessment. The paediatrician retired.

The new paediatrician looked at my son now aged 16 for 10 minutes and said ‘you know he has ASD don’t you!’ This was said on the day my father died of cancer!

However she could not diagnose and we had to wait another 4 months ( and that was expressed) for the MDT team to do the formal assessment. We had our paediatrician visiting but 2 other medics did the assessment - one was a SAlT

In the meantime a well respected Ed Psych family friend was getting so exasperated with the years of delay and the paediatrician who tried to create a new dsm 5 diagnosis. that Ed Psych wanted us to go to Lorna Wing Centre as he thought the paeditrician was a quack - however as DS had diagnosed language disorder, motor disorder, hypotonia and also partial hearing loss the ASD just seemed to be another thing to add to the list.

None of our journey was easy. It started off when he was a day old and I noticed his limbs seemed odd, incidents of cyanosis and then a day surgery turned into a nightmare where a barium swallow showed he could not swallow. Everything stemmed from those clear physical symptoms.

I really, really don't think you should be talking about brain injuries unless you have very personal or scientific knowledge of them.

That’s now how an ASD assessment works.

@Noras, I read @marmoet's post as in they didn't pursue a diagnosis. The Ed psyche could have recommended pursuing a diagnosis and getting the actual assessments for Autism done.

In my own experience the only person recommending my dc was assessed was the class teacher (IIRC) but not to me, rather in the report they sent to the LA with regards to Statutory Assessment. The Paediatrician could have recommended an assessment but after seeing me and reading my report she didn't.

However, it was a good job I bought a copy of my report with me because even though I applied for Statutory Assessment with the lengthy report detailing accurately my child's profile with examples (to get a Statement on request from class teacher) she had not been passed the report. The actual meeting with her was a bit of a car crash. The Paediatrician spoke over me and quite frankly was a bit condescending. I simply handed her my report and requested quite firmly she read it. She rang me first thing the next day to apologise! And then discharged my DC's case providing I was happy with that.

We got significant funding with a list of needs (taken primarily from the report I sent) but no diagnosis was required. I had practically written the Statement.

Unfortunately the school didn't stick to it. They wanted to simplify and group my child together with other children with competing needs in order to share my child's assigned resource. So they did and attempted to manage (hide) my child's attainment in order to cling onto their funding. But my child still progressed because I practically taught them at home and they had the ability there. So I eventually managed to get the Statement ceased albeit this took years.

Unfortunately parents are not listened to enough. Thankfully, I trained as a teacher and worked for a children's charity prior to having my DC which gave me a voice. I knew the professional language - they couldn't bamboozle me with terms.

I really, really don't think you should be talking about brain injuries unless you have very personal or scientific knowledge of them.

@marmoet, why? @Londonwriter has had experience in terms of talking about it with her friend who has had a brain injury.

Do we have to shut down all conversation unless the people involved have had their own personal experience or have a professional qualification?

I don't think you realise how deeply offensive you are being @Londonwriter. How dare you judge me in such a way.

I’m judging you because I feel so terribly sad that you’re in the position you feel you’re in, when you don’t necessarily need to be.

Sometimes, people judge because they want to be kind [hug].

There are few conditions, other than hidden disabilities, where people blame the person with the disability for their own support needs, and make them feel guilty for having them in the first place. Given there isn’t good support, understanding and accommodations for autistic adults, you need to advocate for yourself (which is hard) :(

I’m judging because your mum should be helping and it doesn’t sound, from what you posted, like she is (sorry). You posted to explain ‘what autism is like’. Imagine you were a wheelchair user, and every sensory issue you face was a staircase, and ask yourself whether your mum’s social expectations would be reasonable in that situation - and whether you’d blame your condition, or ableism for them 🙁

@Londonwriter

I think in terms of progression engineering things so challenges are pitched at the right manageable level can be very difficult. It's something I have thought long and hard about many a time.

So challenge is 'eating at a restaurant' but that can mean as many different things and levels as there are restaurants. It depends what the individual finds challenging. The lay person might think someone is fine with this that or the other but not appreciate the actual pertinent challenging aspects are different across different contexts.

Equally the person who finds things challenging might simply think 'I can't eat in restaurants' and generalise without exploring further to see if they can, providing the restaurant is a particular kind of restaurant.

Yes, but - unless I read it wrong - it was @LegoTherapy’s mum.

That’s what jumped out at me :( Either @LegoTherapy is struggling on regardless, trying desperately to meet mum’s social expectations, or their mum makes no attempt to accommodate their needs.

I can understand when someone’s struggling at work - you can’t just demand stuff at work. But you should have some control over your own environment in your free time when meeting your own mum. It’s not like your mum doesn’t know you.

Reading that, I was just… horrified. I can’t imagine trying to manage being autistic when, for unspecified reasons, you have to go to a restaurant that gives you massive sensory issues just to meet your own mum.

@Londonwriter yes, it's sad. However, you don't have the full picture. People don't always get it right, they don't always understand. They don't always know how much social pressure someone is picking up from the cues they give. Or people might be misreading the cues and want to do something nice for them because that's what they think they want. People, generally, autistic or not won't always get things right.

I know, I’m sorry for derailing the thread and will stop now.

However, @LegoTherapy, if you are genuinely in a situation where friends or family members are pressuring you into meeting them in places that make you feel uncomfortable, it’s okay to ask to meet somewhere else. Many autistic people have autistic (and non-autistic) friends and relatives who are happy to work around support needs - whether that means a picnic in the park, gaming at home, or a quiet dark local pub.

Feeling judged and blamed for support needs can be horrible.

However, help sometimes comes when people suggest solutions. And occasionally those solutions are not welcomed with open arms because the person with the difficulty feels blamed/shamed regarding having the difficulty in the first place.

Sometimes people can be frightened to try solutions in case there is a danger support is withdrawn prematurely, that is when they are still experiencing difficulty.

Which can hinder progress. It's a difficult one. How can solutions be explored without triggering feelings of blame or shame or fear that support will be withdrawn? Not having an answer to this means people stay stuck.

With my own DC it was having ongoing discussions regarding personal autonomy, accountability (if people ask what you need help with and why) and receiving help. Where to find the balance.