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.

So people with “high level autism” (not a thing, by the way) should not be entitled to any help or funding to be able to e.g. succeed in education or work and contribute to society etc? I think it’s tragic that there are hundreds of thousands of brilliant autistic people who are hidden away in bedrooms, subsisting off benefits for years because they are denied the necessary supports to live a fulfilling and productive life. Even if you look at it from a purely economic perspective this is suboptimal. If these people, of whom I was one (and to an extent still am because I am underemployed) could be gainfully employed their income tax would contribute to funding for autistic people with higher support needs. We should be levelling the playing field for all disabled people.

Iv never understood this either I thinks it's usually very young people who don't realise the stigma that's associated with the diagnosis.

Exactly this!

When I said high level I didn't mean high functioning I mean people who are at the upper end of the spectrum who will need 24 hr care for the rest of their lives they are the ones who need funding. If your fully functioning then no im very against being given diagnosis that hinder your life it's bad enough In an adult but I couldn't even imagine as a child where it's going to be a massive barrier to life and their future but maybe autism doesn't have the stigma attached to it like bpd and people aren't treat like shit because of it or turned down for jobs and gaslit by medical professionals

I agree with this to and I would rather have that on my medical records then bpd but I would literally rather anything on my medical then bpd

Nobody with an autism diagnosis is fully functioning. If they were they wouldn’t reach diagnosis criteria

@Londonwriter you obviously have no clue because you are not diagnosed autistic. Your post is offensive and trivialises the complexities of living with an autistic brain and the impact that has on everyday life. Anxiety and autism go hand in hand and posts like yours highlight the amount of ignorance there is about autism.

But it's a spectrum you can't compare a fully functioning person who yes may have struggles but are able to have a family, a career and able to run a home to someone who is non verbal, incontinent and needs 24hr care that's unfair to people who have high care needs and their families.

It may be a spectrum but nobody on that spectrum with an autism diagnosis will be fully functioning. If they were they wouldn’t have a diagnosis. The diagnosis criteria have to significantly impact life. It is deemed to be a disability for a reason.

Just wondering if somebody started off a thread with the same title but with more visible disabilities if they would be seen as fair game to be picked apart? There is a distasteful tendency for it to be deemed ok for autism to be scrutinised and attacked on MN.

Do you have any idea how hard it is to get a diagnosis for a child it takes often takes years with several professional people involved not just handed out like candy!

All diagnosis are a spectrum so probably yes. I think your being unfair to autistic people or we have a very different view of what fully functioning means. If your saying not fully functioning as meaning they will have struggles then that's every single person on the planet. If your saying every single person with autism will never be a fully functioning adult your seriously doing a disservice to many people who have learnt coping skills along the way to become fully functional adults.

Sorry I was confused by your wording because it sounded like you were referring to “high functioning” in contrast to people who cannot live independently. People with low support needs are not always “fully functioning”, as you put it. If we did not experience significant difficulties we would not meet the criteria for an autism diagnosis. The diagnosis is indeed stigmatised (though as you say, not as badly as BPD) but I wouldn’t describe it as “a massive barrier to life”. A diagnosis can open doors to support that would not otherwise be available.

As an aside, and as several others have already pointed out, the autism spectrum is not linear and does not have an “upper end”. The labels “high/low functioning” are also obsolete in clinical parlance. Autism is now referred to in terms of levels of support needs which is less stigmatising than functioning labels.

Anybody with an autism diagnosis is not fully functioning. There is a diagnosis level you have to pass and fully functioning is not it. Why would anybody get a diagnosis if it has not and is not hugely impacting life?Autism is classed as a disability for a reason. I have an autism diagnosis and coping skills that work to some extent. I’m not fully functioning, neither are my children.

Belittling and dismissing the diagnosis of autistic people, inaccurately brushing them off as fully functioning by default when their diagnosis criteria has been assessed as significantly impacting life is not ok.

A lot of people ask whether they should be assessed on here when they are functioning, mainly to ‘understand themselves better’.

The problem is these diagnosis are being given mainly to small children so obviously at 6 a person is going to have higher support needs then the exact same person has at 26 if they are the lower end of the spectrum however someone at the other end of the spectrum with high support needs will need the same level of support at 6 as they do at 26 and 66

@Londonwriter I can't speak for the person you've quoted, but their experience is similar to mine and it's not anxiety. It can be hard to explain. I've experienced anxiety, and it shares the overthinking element but it's more than that

I have no fear of what other people will think, no worry about what will happen next (eg that people will laugh), my brain doesn't get to the 'consequences' stage. Sorry if I offend anyone, I can't think of a better way of describing it - it's more like early dementia in the moment - I can't make sense of anything. My brain is so overwhelmed by trying to work out so many things at once (people, conversations/dynamics, the visual stimuli of the building, the smells and textures) that I can't focus on what is important. I can read the menu but i don't grasp the meaning. I wouldn't have picked up the numbered stick because somehow I wouldn't register it. I can't understand simple unexpected questions, I hear the words but can't make sense of it.

That's the reason for all the prep. I need to understand as much as I can in advance because I won't be able to take on all the new stuff when I'm there. Its paralysis like being stuck in fight or flight, only I'm not panicking, just confused and overwhelmed

And I'm someone who scores low on the sensory criteria for autism.

@Firefly1987 I think there's a lot of overlap with OCD, and it's quite common to have both diagnosis. Its a lot of work!

Highly unlikely they’d just get a diagnosis if there was no proof assessment criteria hadn’t impacted life significantly.

I think you’re misunderstanding the situation. The people getting diagnosed are mainly small children having difficulties with daily living. At my DS’ mainstream primary school, these are often children with speech delays who struggle with basic tasks, such as writing, reading, eating a varied diet, sleeping through the night, following instructions in class and playing with others.

At the most extreme, they are children like my DS who - without support - cannot be in a classroom at all. He cannot go to the school toilet unless the hand driers are switched off. He cannot be in the PE hall without ear protection. If he becomes overwhelmed, he flees the classroom and rolls about on the floor in the corridor, screaming.

As autism is mainly genetic, parents of autistic kids are often also autistic. They often have a patchier work history than the average person of their class/educational level, but they’re successfully raising children, attending meetings at school, serving as school governors, running fundraising events, and so on. Many of these parents don’t have a diagnosis but, if you’re the socially-awkward parent of four autistic kiddos (in some cases) and can’t stand crowds or loud noises, you’re unlikely to be NT. Some of these parents do have MH difficulties and, when their kids get diagnosed, they also seek an autism diagnosis.

The people posting on here who are ‘functioning’ grown ups weren’t functioning aged 5. What would you suggest, instead? That we let young kids struggle friendless and unable to learn anything (or, even be in the classroom at all, in some cases) because getting a diagnosis that helps explain their difficulties might be stigmatising, aged 25, when applying for a job?

Well no they’re not mainly given to small children. It takes at least 4 years to get a diagnosis via paeds and similar to get on to the books of CAMHs. Girls are often overlooked and symptoms don’t manifest outwardly until teens when they can no longer cope. I got my diagnosis in my 50s. My nhs autism support group has a lot of late diagnosed members who have had lives destroyed by autism and who have been diagnosed late.

Late diagnosis is another huge bugbear to go with the “ naughty children” parents just want a label for and now apparently it’s masking that needs to be picked apart even though every autism expert around will say how debilitating Viv’s for autistic people.

MN is a lovely welcoming place for autistic people, children and their parents. 🤔

No maybe it's something that needs reassessment as children age as like bpd especially when diagnosed in younger people potentially won't meet the criteria in 10/20 years time but they don't offer this once it's on your medical records it ain't coming off

Autistics with low support needs do indeed have very different experiences to those with high support needs but our neurotypes are more similar than they are different. I’m pretty passionate about community and solidarity among all autistics at all levels of support needs. I would also note that most autistics who need 24hr care also have comorbidities that can be more disabling than autism by itself. Autism is not an intellectual disability and just because somebody cannot speak does not mean that they cannot communicate and understand.

And just because someone appears to be “fully functioning” (again, your wording) doesn’t mean that they are not significantly impacted by autism. Would you describe an autistic person who is having a meltdown because of sensory overload, and is uncontrollably stimming, unable to speak and hitting themselves in the head as “fully functioning”? If you saw that in the street I imagine you might think “that person needs some kind of support”. Well, I have been that person.

I’ve also had jobs and relationships and stuff. And thankfully meltdowns like that are rare for me now. But I am still disabled. I still find it extremely hard to cope with the demands of life, and I’m incredibly sad that my neurodivergence was not recognised when I was younger. With the right support, things could have been a lot easier.

So people with “high level autism” (not a thing, by the way) should not be entitled to any help or funding to be able to e.g. succeed in education or work and contribute to society etc? I think it’s tragic that there are hundreds of thousands of brilliant autistic people who are hidden away in bedrooms, subsisting off benefits for years because they are denied the necessary supports to live a fulfilling and productive life. Even if you look at it from a purely economic perspective this is suboptimal. If these people, of whom I was one (and to an extent still am because I am underemployed) could be gainfully employed their income tax would contribute to funding for autistic people with higher support needs. We should be levelling the playing field for all disabled

@mutationseagull

I don't really concern myself with whichever diagnosis, or be frank. I just know there are some things in everyday life people find challenging and am sensitive to that and aim to be as compassionate as I can be.

All I know is that when my DC was at school SEN meant low achievement. It was in all the STATs.

I had got significant funding for a Statement of SEN when my DC started reception before I discovered that. The funding was supposed to be targeted right? So the DC gets their educational needs met?

Wrong. That's not what happens in practice. What happens in practice is 'value add'. Which means resource is shared in the classroom between lots of competing needs and your child's designated 1 to 1 support, is assigned to supporting all of them. The result? Attainment is 'managed' to keep the member of staff. This distorts actual needs. IEPs were concerned with things like getting my DC to line up neatly for 10 minutes plus in Year1 (as per the stupid and pointless school routine at the time). My child achieved more and exponentially more at that when I managed to get the Statement ceased. The (non) support ceased. My child was then able to really start learning and the playing field finally looked more level. Thankfully.

I also think it is important to not treat diagnoses as definitive of somebody's whole being and potential. I mean even the diagnoses change over time.

And I am thankful I didn't push for a diagnosis of my DC. So are they (we have discussed this). Like it or not there is stigma attached to a diagnosis and if you can do without the (non) 'support' you can also do without the stigma. Oh and my dc is now capable of queueing quite politely if so required. 😉

I would almost certainly have received a diagnosis as a child. I had profound difficulties making friends (I hid from other children throughout school). I was almost selectively mute (I did say yes and no) throughout primary school, and I was completely engrossed in a fantasy world of my own making or in books. At the time (60s and 70s) I was one of a small group of children who spent lunch times and breaks in the school library to escape from other children.

I think the difficulties with social interaction and communication exacerbated an eating disorder which led to years in and out of psychiatric hospitals (not a nice experience). Yet, anxiety driven hyperfocus allowed me to achieve highly in education as a mature student and to forge a career.

Difficulties at the workplace really made the work environment stressful for me. These included not knowing boundaries (e.g. grossly oversharing), and being incredible untidy (I feared that if I put anything in a drawer, I would forget about it (and I would)!). I am not an unpleasant person, but I was very difficult to work with.

Now I work from home, and I love it. I am making friends slowly in an interest group that I intend, and I feel so much more in control.

To summarise, my neurodiversity (which has never been formally diagnosed) has not disappeared. I have not 'grown out' of any autism/ADHD that I may have. Rather, my environment and lifestyle has changed and allowed me to be much more in control of factors that are problematic, and much more able to embrace and utilise my strengths.

Yet, this could change, and this is why, at the grand old age of 64 I am considering saving up for an assessment. I know that my work could end, my living conditions could change (I may need carers or residential care in the future). I may become lost for words in certain situations and this could be mistaken for dementia or mental illness. Therefore, it is important that any neurodiversity is acknowledged.

We do not grow out of autism or ADHD or any other neurodiverse 'condition'. However, there may be times when society accommodates diversity (and neurodiversity) well. It is prudent to be aware that such accommodation is not universal or permanent.

No it doesn’t need reassessment because the assessment criteria stipulates that need may fluctuate. The difficulties are still there and reach a threshold. Some of my struggles have got significantly worse with age.

Another observed (read about this several times) result amongst SEN staff is stims amongst groups can be contagious. My DC certainly picked up stims and anxieties from the other DCs they were around. Which is interesting. Modelling other's behaviour and fitting in right there....

But again this can distort actual needs. What is symptomatic of an actual condition and what is symptomatic of modelling to fit in with a particular social group?

It's a complex issue.