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.

Since you keep talking about “ends” of the spectrum you are clearly showing an inability/unwillingness to learn, so I give up.

It doesn’t really work like that. It’s a neurodevelopmental condition. It’s the way your brain is wired. It’s not that people don’t have the condition anymore. It’s that they’re not in school.

My DS7, for example, needs a full-time 1-to-1 to be in school. You don’t genuinely think he’s a problem at home, do you? My home is a quiet, dark place with understanding parents who listen to and care for him, and don’t force him into crazy situations that he doesn’t enjoy.

As an adult, you can choose (hopefully) your career, where you live, and how you spend your leisure time. The more you control those things, the less disabled you feel (and appear). You also learn how other people think and how to manage social situations better, as you grow up.

In short, it’s not BPD. It’s nothing like BPD, at all.

My previous GP refused to refer me for assessment because she deemed me successful with having a university education, marriage, 3dc and a job. That education was a shit show of trauma after trauma, the marriage the same, the dc are all struggling with their own neurodivergence, and I had to quit my job because I couldn't cope. I now work for a relative where I dictate my own conditions and days and hours and don't have to deal with people. I'm not sure I'll ever work again in a mainstream job. Not because I'm lazy-I work hard in a physically and emotionally and mentally demanding job-but because I can't navigate everything that goes alongside the actual work. I don't understand the dynamics, I don't fit in, I frequently shut down and need time off, My sickness record gets me into regular meetings, I upset people with my uncensored comments, I get bullied because I'm different, I can't cope when people break the workplace or societal rules, I can't go to the social events expected of me and become further outside the group and have no chance of fitting in.
I need earplugs and sunglasses and wear sunglasses in the rain. Socks and gloves are nightmare items that make me feel claustrophobic.

What I don't get, is that people acknowledge autism can manifest quite differently in different people and that nobody can really understand it unless they have it, how on earth do people think a diagnosis is going to help fulfil needs?

Surely needs should be met regardless of diagnosis? And needs are different to a diagnosis since a condition can manifest in a huge variety of needs.

Funding? Well it really depends very much on how it is spent. You certainly don't want a condition to be capitalised on for funding.

So are you suggesting all diagnosed lifelong disabilities ( including visible disabilities )should be reassessed to see if people reach the assessment criteria or just autism?

Sadly the “career” choice is hugely impacted .Many with autism don’t work and those that do have careers hugely impacted or are doing jobs far below their capability. I’m not sure you manage social situations better, most I know just avoid them because they have more opportunity to do so as an adult but it does impact life.

We’ve no idea how many autistic people work. Statistically-speaking, 1 in 10 children under 10 with an autism diagnosis have a learning difficulty. This rises to a third in people aged 35 upwards.

Short version, most autistic adults don’t have diagnoses. And the ones who are working are much less likely to do so…

It depends on what you mean by a ‘social situation’. Yes, I avoid 300-person weddings, hen parties, and so on. I’m personally out almost every weekend meeting friends (often undiagnosed ND ones) in quiet uncrowded places like parks - as do most (diagnosed) autistic adults I know.

NOTE: I don’t have a diagnosis. But I have two ‘perfectly normal’ DS who are both diagnosed autistic, one with an EHCP.

I personally don’t see what’s ‘odd’ about either of them - they seem ‘perfectly ordinary’ to me.

it’s not just about a set of behaviours at one point in your life this is not how autism is diagnosed it is not how autism impacts people

it’s a condition with a huge array of behaviours and how every individual is impacted is just that individual but it’s not a condition you grow out of

There is evidence that personality changes and develops, particularly if someone has access to effective support and interventions. Some people may meet diagnostic criteria for a medical condition at, say, 30 years old, but then by 50 no longer meet the criteria due to beneficial changes. That doesn't mean they never had the diagnosed condition - it means the condition is no longer considered to be an active/current diagnosis.

In relation to personality disorder diagnoses in children and young people, while traits may be identified which could predict a subsequent diagnosis, children shouldn't be getting diagnosed with personality disorders. Their personalities are still developing, and they can't be robustly considered to meet the diagnostic criteria as there wouldn't be evidence of long-term impairment/difficulties across circumstances and life stages. If that diagnosis has been given to someone you know under those circumstances, they can and should seek a reassessment.

When someone has a diagnosis of a condition (physical or mental) which can relapse, remit or resolve over time, particularly with appropriate interventions, specialist healthcare professionals will/should be considering at each clinical contact: is this diagnosis still current? has the pattern of difficulties changed? is this treatment plan still appropriate? If someone has been discharged from secondary or tertiary care but thinks they need reassessment of a previously diagnosed condition, they can be re-referred by the GP for this.

Removing a previous diagnosis from someone's medical history and records would be negligent, even if that diagnosis were found to be incorrect at the time at which it was made, in which case it would still be relevant that someone made that diagnosis as it is part of someone's experiences of healthcare contacts - it's not staying in their records as a permanent misdiagnosis, rather, the records should reflect that the incorrect diagnosis was made and how that affected them. In the case of personality disorders, it is still relevant that someone may have had a previous diagnosis of this, in terms of understanding their underlying personality structure and how this has evolved over time.

Pervasive neurodevelopmental disorders such as ASD have recognised courses they follow throughout people's lives. An autistic child will be an autistic adult, just as an autistic adult was an autistic child. Regular reassessments of current needs are important, as people's needs do change over time. For ASD, though, the underlying diagnosis (if accurately made initially) remains the same.

When we think about whether someone who is autistic has 'got better', it's important to consider what we mean by 'better'. Some autistic people can and do work (including in quite high-achieving positions), have families and friends, etc., and outwardly present as functioning fairly well in a neurotypical world. What people see there is like a duck gliding across the water... without seeing how hard its legs need to work to propel the duck forward. People don't necessarily see the effort that has gone in and continues to go in, to coping strategies and masking. Is that 'getting better'? It's potentially a viable long-term level of functioning, but it's more consistent with being framed as effective management of a lifelong condition, rather than indicating that the condition has gone away.

These are pretty depressing statistics. I’m not surprised re the lack of support in work given the prevailing MN attitude towards autism.

https://www.autism.org.uk/what-we-do/news/new-data-on-the-autism-employment-gap

So unless you know a diagnosis will lead to actual support why diagnose?

What we do know is that diagnosis does lead to stigma and that support, currently, is scant...

In terms of accepting yourself I don't know how the stigma would help that.

Unfortunately, if you look at most derogatory insulting terms people might use about other's they were originally words used to denote a disability. ☹️

I refuse to give people the ammunition myself.

Try table 1 in this report: https://www.england.nhs.uk/long-read/autistic-peoples-healthcare-information-strategy-for-england/

3.74% of diagnosed autistic boys under 9 (registered with a GP) have a learning disability.
31.88% of diagnosed autistic men aged 35-44 have a learning disability.

There are 44,349 boys aged 0-9 diagnosed with autism, but only 8,917 men diagnosed with autism aged 35-44.

There are only 299 men aged 75+ with an autism diagnosis AT ALL in the UK.

In short, 96% of autistic primary school boys don’t have a learning disability. A third of autistic men have one. No pensioners have an autism diagnosis. There are ~35,000 men aged 35-44 without learning disabilities who would be diagnosed with autism if they were a child today.

Either there’s been an exponential growth in autism without a learning disability. Or most autistic adults of normal or above intelligence in the UK today got to adulthood without a diagnosis.

Which is most likely, do you think?

My daughter’s entire treatment has been adjusted due to her diagnosis, I go to an nhs autism diagnosis support group… I know have answers for difficulties which has helped with confidence….

My 18 year old has just last week been told he has ASD ADHD PDA and severe anxiety finally got his diagnosis
He in fact masks so well that it was missed all through primary school and he didn’t have big problems until he started secondary school
My son masked so well it wasn’t picked up until it basically slapped us in the face with how his life fell apart at 13
we have been told he was juggling balls his whole life until a couple of more balls were thrown in and he just couldn’t do it anymore
so I think some people mask so well it won’t be an issue until a few more balls are thrown in.
sorry about the juggling analogy but that’s how it was phrased to us
He was diagnosed through the NHS
My son needed to know why he is the way he is and that is why we pushed for his diagnosis

My daughter’s entire treatment has been adjusted due to her diagnosis, I go to an nhs autism diagnosis support group… I know have answers for difficulties which has helped with confidence….

@B33sandTr33s, so you have answered my question. You did have access to appropriate support.

I think the answer is to research the support available before a diagnosis is sought. If there is no appropriate support for an individual's particular needs, I would question seeking a diagnosis.

There can be multiple individual reasons why someone might want or need to have an assessment that then leads to a diagnosis.

Often, people being diagnosed in adulthood won't necessarily know "oh, I'm autistic, better get a bit of paper to confirm it", but instead will have a lifelong history of social, emotional and other difficulties, low mood, low self-esteem, etc. People then seek help and answers for "why am I experiencing this and is there anything that can change it?". A diagnosis of ASD then emerges from that assessment process.

Some people may strongly suspect that they are autistic but not feel a need for a diagnosis, until something else comes along that means a diagnosis matters. For example, if someone has a child and thinks there is a chance that child might need an assessment in order to access appropriate help and support in early life - a parental self-diagnosis doesn't carry any weight, but a professional diagnosis of a neurodevelopmental disorder in a first-degree relative would be deemed relevant to assessments of likelihood of a diagnosis being present in a child.

Neurodevelopmental disorders do have other medical associations (mental and physical), so from a professional perspective it is useful as well to have that information.

Sharing of a formal diagnosis can lead to stigma, but so can many diagnoses. We wouldn't tell someone not to try to find out what's causing their physical health problems because it might be something for which there's limited NHS support, or because it could lead to stigma at work or elsewhere. We'd tell someone in that situation that they have every right to find out what's causing their problems and that they have legal protections against discrimination. Mental illness, neurodevelopmental disorders, etc have the same legal protections and people should have the same rights to find the answers to their own questions about their health.

It's not for any other person to judge whether or not a diagnosis has importance or benefit to an individual.

@B33sandTr33s but forgive me for saying, reading your earlier post describing your daughter's significant difficulties (college, getting buses, eating in public and so forth), I am actually wondering now what practical help the support you receive achieves.

It's not for any other person to judge whether or not a diagnosis has importance or benefit to an individual.

@Scirocco, I'm not judging I'm asking a question. Equally people shouldn't judge others who do not proactively seek diagnoses.

I didn't say you were judging. I said it's not for any other person to judge. Similarly, if someone doesn't want to seek a diagnosis, that's up to them.

Your post about another poster's child and wondering how much the support they receive "actually achieves" does come across as rather judgemental though. You have no way of knowing how hard things may have been prior to that support being in place or how hard things could be now without that support, or how much progress the poster and her daughter have made. Some posts on a forum where people seek advice and support (usually for things that are difficult) do not provide a full assessment of how life actually is. If the poster and her daughter feel the support they receive is helping in any way, that's great, and that's what matters there.

I think we need to be careful about sweeping statements regarding how long it takes.

Some areas of the country are clearly performing better than others. My friends son took 6 months via CAMHS and my dc took 4 months from start to finish for a global assessment which ruled out autism and diagnosed ADHD.

It’s pretty well known that currently there are huge waits across the country. Some areas may be more fortunate but the majority aren’t . It only took myself and my dc who were expedited 6 months however things have changed in our area since we were diagnosed.

It enabled her to access MH teeatment and for it to deviate from the normal path, it enables her to understand herself better, be kinder to herself, be better informed re strategies which will help, it gives her access to specific ASC support specified on her EHCP in college….

@B33sandTr33s,

It enabled her to access MH teeatment and for it to deviate from the normal path, it enables her to understand herself better, be kinder to herself, be better informed re strategies which will help, it gives her access to specific ASC support specified on her EHCP in college….

Thank you for answering my question.

It's hard for me to see the benefits of support sometimes when my own experience of acquiring funded SEN support for my child included treatment which was most definitely unsupportive and potentially detrimental. Hence why I pushed for the Statement to be ceased. I did not get as far as pursuing a diagnosis - the provision of 'support' was simply based on the additional needs identified when I described my child's profile in detail in a lengthy report. At the time parents could apply for Statutory Assessment themselves which I did at the request of my DC's class teacher.

So that's my bias. And when I see people who are still very much struggling who have access to (official) support I do question the benefits of support especially when there is so much stigma attached to receiving it. Anyway my DC is an adult now. Not receiving any support for additional needs now. It's up to them entirely whether they wish to seek it in the future. My DC has seen the massive file I have with all the paperwork detailing what happened. It's it their's to keep should they want it.