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.

According to a number of researchers and clinicians, inaccurate self-diagnosis of autism is very rare. Most self-diagnosed adult autistics have been misdiagnosed with other conditions for years, and have conducted pretty exhaustive research before arriving at the conclusion that they are autistic. It is not an easy or quick process. It is often painful and hard to accept. Neurotypical people are not routinely going around claiming this incredibly stigmatised diagnosis. Personally I have never met an autistic person who was incorrect about their self-diagnosis. I’m pretty good at recognising other autistic people – most autistic people are (this is also supported by research). I’m sure incorrect self-dx happens but it isn’t some kind of epidemic as you seem to be implying.

Furthermore the difficulty in access and affordability for autism diagnosis means that self-diagnosis is often the only form of “diagnosis” that many people can hope for. Add to that some of the downsides of formal diagnosis like being banned from emigrating to certain countries and in some cases one’s competence as a parent being called into question by authorities. The self-diagnosed are not taking monetary resources away from the formally diagnosed, because they are not entitled to any. All self-diagnosis means is that they are able to better understand and accept themselves and feel a sense of belonging among other autistic people.

And yes, while not everyone in the autistic community accepts self-diagnosis, the majority do for reasons like those I have explained above. Undiagnosed autistic people are still autistic and I believe it is cruel to shut them out of our community just because they don’t (yet) have a piece of paper from a doctor. It is also cruel and ironic to call them idiots, a word which was originally used to describe developmentally disabled people.

My DH is autistic and we've often spoken about whether he could "pass" an assessment now because he's basically learnt the conventions of social communication. He's set his life up in a way that allows him to be "high functioning". He has lots of friends and a rich, full life. He hasn't "outgrown" his autism; he's learned to understand himself and manage it. And it still occasionally falls apart with pretty spectacular results (think, extended periods off work, near breakdowns).

OP, kindly, I don't think you were autistic. Deficits/differences in social communication are more than being socially awkward, doing some cringe stuff and disliking eye contact - all of which is describe typical teens. My DH still, essentially, goes into every conversation with a colleague or slight acquaintance with a script, or puts the person into an "archetype" to plan how the conversation might go. It's like he's running an extra computer programme to the rest of us, all the time, and that strain is enormous. Even "high functioning" autistic people either have to give themselves time and space to manage that strain, or they break. If this doesn't ring true, I doubt you were ever autistic.

Surely you have relatives with traits as it’s mostly inherited genes.

I have to say I agree with this, and I think some self-diagnosers often damage perceptions of ND people.

I get how hard it is to access diagnosis. I have three ND children who all face significant challenges and an adult diagnosis of ADHD myself. ND is a huge part of our lives and I know lots of kids sitting in long waiting lists for diagnosis or therapy.

I’m thinking of the TikTok stuff and the memes, where autism characteristics often seem to get boiled down into poor social skills, or even just being a natural introvert. ADHD is presented as challenges coping with busy lives that many people experience, because many of us have crazy lives. A lot of it has quite a superior tone which grates with me, and I can only assume others.

I really understand the need for more positivity around ND for those who experience discrimination. I am personally really happy that many kids now get that some children have autism and that means they will behave differently (including non-verbal presentation, violent meltdowns, extreme sensory needs) without seeing it as a massive issue. But if people are seeing material that positions ASD and ADHD as just personality quirks, or organisational challenge, it doesn’t do a huge amount to help public understanding of these conditions.

I’m sorry my post offended you. I did not write it to goad or bash anyone. I don’t have a point to prove, I am genuinely curious.

Thank you for sharing your experiences with us: that really is the point of the thread, to just explore the issue. You have taken time to share in some detail why you think I am wrong, I respect that and truly value your perspective and contribution.

I know what you mean, OP.
I'm just back from holiday and my youngest daughter (nearly 15) was a challenge. She presented with some very ASD behaviours. However it's hard for me to know what was typical teenage awkwardness, and what could potentially be ASD.
And it took taking her out of her comfort zone for it all to emerge.
Her eldest sister was diagnosed at 16, so there's that in the mix too.

I always struggle to understood how, when it's a spectrum disorder, where the spectrum ends and where just 'personality' begins.

@Finlandia86 I got your post. I see a lot of my teenage self in my daughter but I am not autistic. I still have some autistic traits which I hadn’t recognised until I understood autism better, and there is obviously a lot of overlap with ADHD in any case. I think wondering about our brains develop, and how that might relate to neurodiversity in childhood and then adulthood, is valid.

FWIW in ADHD there is a clear connection between female hormones and ADHD symptoms. It’s been observed that they worsen during puberty and menopause. I’ve certainly experienced that on both occasions.

Do you have a family and demanding job -im limited e -it’s when life becomes very demanding that an adult can fail to cope having done so when younger with fewer responsibilities.

Our DD went through a full ASD assessment this year and didn’t get a diagnosis. Met some criteria but not all. It’s not easy to get a diagnosis.

Please could I ask if this was done privately or on the NHS.
Thanks

It is possible to have inherited autistic traits that are real and yet not have or in the long run need a diagnosis, because they don't have enough of an impact on functioning. In my family there are some diagnosed and some undiagnosed with ASD and of the older (grandparent) generation two very clearly autistic without diagnosis, one of whom had a breakdown and took very early retirement.

Anyhow whilst people have pointless musings on ASD just to remind you that the physical aspects more likely then not continue until adulthood eg abnormal gait and tone etc.

Really it’s not a case of some idiosyncratic toe walking - toe walking for ASD is linked to high as opposed to low tone. Any decent paediatrician with proper training knows the interaction between motor and psychological issues in ND and there is a huge overlap. Many of the repetitive behaviour are linked to sensory input - too much or too little muscle tone feeding back to the brain.

Most properly diagnosed kids when adults don’t overcome the motor issues or the gait - unless a huge succession of study and several papers on this are wrong.

With the NHS you are observed in multiple settings and there is a multi disciplined team so that’s less likely. There are gold standards of diagnosis. The Lorna Wing centre is also highly regarded.

There is a strong scientific inference that people with ASD are at higher risk of Parkinsons disease as they progress. So by all means muse about whether you might have been ASD as a child but take on the reality that stats speaking you have a higher risk of Parkinsons due to these abnormalities of tone ( that for ASD accounted for the toe walking ) So there’s something to worry about.

You do realise though that some people will be severely impacted in all areas though ?

@Finlandia86

if you are still here, I think many of the more recent posters have identified you as a ‘heretic’, to continue my previous observation.

‘And OP, you’re so obviously on the wind up. I am so sick of these offensive Threads.’

‘her post has highly offensive parts to it and it is there to goad’

’And all the ‘self-diagnosis is valid crap’ does is encourage people like the op to make these regular offensive, ignorant posts.

‘If this was someone saying oh I was a bit dim at school, most likely had a learning disability, but it’s ok, I grew out of it….everyone would rightly be horrified at the offensiveness of it and MN would remove it immediately. But apparently directing this stuff at those with autism is fair game. It’s disgusting.’

‘It’s pretty insulting to those with ASD and their parents to write a thread like this by the way.’

‘these goagy posts that are clearly meant to bash people with diagnosis ‘

FWIW, I don’t agree with any of the accusations of unkindness or ‘ goading’. It’s still an interesting thread, well worth reading. The heresy accusations provide another layer of insight, to me.

In recent years, it has become clear that children with autism spectrum disorders (ASDs) have difficulty with gross motor function and coordination, factors which influence gait. Knowledge of gait abnormalities may be useful for assessment and treatment planning. This paper reviews the literature assessing gait deviations in children with ASD. Five online databases were searched using keywords “gait” and “autism,” and 11 studies were found which examined gait in childhood ASD. Children with ASD tend to augment their walking stability with a reduced stride length, increased step width and therefore wider base of support, and increased time in the stance phase. Children with ASD have reduced range of motion at the ankle and knee during gait, with increased hip flexion. Decreased peak hip flexor and ankle plantar flexor moments in children with ASD may imply weakness around these joints, which is further exhibited by a reduction in ground reaction forces at toe-off in children with ASD. Children with ASD have altered gait patterns to healthy controls, widened base of support, and reduced range of motion. Several studies refer to cerebellar and basal ganglia involvement as the patterns described suggest alterations in those areas of the brain. Further research should compare children with ASD to other clinical groups to improve assessment and treatment planning.

Privately, multi disciplinary panel to NICE guidelines.

We were told she would not have met the threshold to get past the referral stage with NHS as she is very able, doing well at school and “was not in crisis”.

No diagnosis was an expensive surprise. I think we and they thought she would meet all the criteria but she didn’t. She has traits but the biggest thing was that there wasn’t enough evidence from early childhood. We are now thinking a lot of it is just anxiety.

I hope you don’t mind me butting in, but I don’t think we need to get into a discussion about private vs nhs diagnoses. I think that may lead to upsetting people and I don’t want this thread to be pulled.

I kind of get what you mean. I have a diagnosis of ADHD (and the consultant said I had strong indicators of ASD, which my eldest child is diagnosis with, although I haven't been assessed for that). I found social situations cripplingly difficult in late childhood and early adulthood. So much so that I would think about taking my own life frequently. I felt like I was going through the motions and getting everything right "on paper" but in real time I was just off everyone else's wavelength and couldn't get it quite right.

I'm now 50 and I'd say for the last 20 years I've been getting steadily "better" though I think in fact a lot of that is just about being in more of a comfort zone socially. Once I was a mother, I understood the role and fitted into it. I do a senior job and I'm comfortable doing that because I know exactly what the role requires. So it's easy to feel that I'm "better" than i used to be. But then if I'm in a social situation which I'm not used to - like recently at the school fair - I felt awkward, gangly, tongue tied, had no idea how to talk to people or even how to stand or where to put my hands and I realised I'm just as neuro diverse as I've always been.

@BusMumsHoliday The example you give of your DH is interesting, because this is something I think we all do! (but perhaps not?) I think interactions with colleagues/strangers/acquaintances do follow a script on both sides. As we grow up/move through various environments we learn what we need to say/how to act on both sides ("the script"). Usually interactions are pretty rote, so there's no real planning needed, but I think it's very normal to plan conversations when the scenario is slightly out of the ordinary.

FFS. If I may.
I grew up in a Communist country, where most
of us were abused by "parents", emotionally and physically (who was really unlucky). Mistakes and weaknesses were severely punished, success
overlooked. Any mischief was met with being ostracized in the "family", any anxiety at school was met with mockery from the "teachers".
All these bastards were the so called "silent generation".
And now what I want to say:
There were virtually NO autistic peers, or peers with ADHD simply because it wasn't known, our feelings didn't matter and at the end, any misbehaving could be just brutally beaten out of the unlucky ones. So they learned as best as they could not to even show autism.
About 80 percent of people of my age, 45-50 are now receiving treatment for their MH as a result of this.
I believe I have Asperger's, but grew out of it. However, I was very resilient and that means
I didn't start to hate myself, but I hate my parents and the whole bunch of (mostly deceased) then adults with passion. Apart from a couple of exceptions.
Your ignorance is astonishing, but then I suppose you are young and if your "parents" ever behaved like ours, they would be criminals. Full stop.

I was all of the things you list in your OP when I was a pre-teen and teenager. Maybe not so much sensory-seeking, but definitely everything else. I'm not on the spectrum.
My son is "high functioning" on the spectrum, and it's a different thing entirely. I had obsessions that I loved to tall about. He literally can't talk about anything else.
I found social situations excruciating. He meltsdown in range and tears, unable to regulate his emotions at all.
I don't like wearing tights because they're uncomfortable. He is driven to tears and rage by any tag or label inside his clothes and finds getting his hair cut painful and traumatic.
All teenagers tend towards black and white thinking. My son can't actually tell a lie.
He also has extreme synaesthesia.
With accommodations he's doing really well in school and in life, but it's really a very fundamental difference, not something you can will or work yourself out of.
We had a positive turning point when I realised that the things I thought were my son being awkward, or difficult, or a bit of a wimp (I feel awful saying that now!) were actually evidence of massive courage, resilience and strength, as he does his best to adapt to the neurotypical world. The label and diagnosis help to make sure that other people he encounters (e.g. teachers) and he himself understand this too. The consequence has been profoundly good.

Edited for typos

Thanks for posting this, op. I feel quite similar- would certainly have been considered ND if I were a child/teen now.

I have learned to manage (mask?) and have a full life, successful career, friends and family, and no one would think of me as exhibiting ND traits (except one family member). But I need proper downtime to do this- time when I am not interacting with others- which it’s fairly easy to work into my life. But is this the stress of masking, or a NT person who is somewhat introverted, or just a common or garden NT person who enjoys her own company sometimes?

I still often feel like an external observer of my social interactions- here I am socially interacting, now I’m expressing sadness because I’m being told a sad thing, now I’m laughing wryly at a half-joke- etc etc.

But don’t we all feel like this sometimes? Maybe we don’t. There’s a bit in Annie Hall where she’s in bed with someone but to show her disassociation we see her getting up and going to sit in a chair, watching herself in bed, an external observer of an event she’s also a participant in. When I first saw it it was life-changing for me, to see on screen a representation of a feeling I have experienced so often (and not just in bed, in all sorts of encounters with other people). But isn’t that the human condition, or part of the modern struggle to fully experience the moment? Or perhaps it isn’t and most people never feel that duality. I don’t know.