Autism society

@likearoomwithoutaroof you’ve again described my situation

But that's not people looking to ID with a fashionable group, it's more about mentally unwell people trying to make some sense of their lives.

ADHD is not mentally unwell.

We were talking about hierarchies earlier and how trans may be perceived by some as preferential to autism. The same can be said for autism over BPD or narcism, or even ADHD.

@likearoomwithoutaroof wow, that's fast - I've heard it varies a lot depending on where you live, and the knowledge of your GP but I don't think I've met anyone who waited less than a year. Good luck with your assessment.

@Tibtom yes I have come across that, particularly with ADHD. A lot of people who feel they don't fit in and have experienced mental health crises will look for an explanation that makes sense of who they are, and no doubt some will hit on the wrong thing. But that's not people looking to ID with a fashionable group, it's more about mentally unwell people trying to make some sense of their lives.

Sorry that was for @OhDear2200

Mine is exactly the same.

Day to day, functions well. Masks well, is coping in school (with full time support via an EHCP).

Meltdown time is another matter. She is completely out of control, lacking capacity. She doesn't lose her speech but she slips into being repetitive, scripted - she can't 'speak' in independently constructed sentences.

So when people see my seemingly 'normal' child who is 'just a bit anxious/shy' etc etc etc I think - yes, she's so 'normal' that she qualifies for mid-rate DLA and in her registered carer as well as her mum!

She is much like I was as a child.

@helenshair That is a fair point, but I'm going through the diagnosis process myself right now. It's not that bad everywhere. I emailed my GP and told him I'd like an assessment and why. He sent me some forms to complete which I did and he rang me, chatted through the results and agreed to refer me. Referral sent, I received an email from the assessment centre a few days later with loads of forms to complete. Did them, a few days later they told me I qualified for a full assessment and that the wait was 6-9 months. I'm waiting for the assessment now. I contacted my GP in June, initially. I'm in the south.

helenshair whilst I think that is recognised, one if the issues with self-diagnosis is not that they individual doesn't have real 'symptoms' (though it may sometimes be the case) but rather that they don't have ASD. Recently there was a self-diagnosed 'autism' blogger with a reasonable following who got diagnosed - with ADHD. ADHD diagnosis fitted her well and had caused her difficulties throughout her life. Like autism it also hard to get diagnosed as an adult etc. But it is not autism. Ditto a friend who is a psychiatrist says it is not uncommon for those she diagnoses with Borderline Personality Disorder to arrive thinking they are autistic and it can take some explaining to help them adjust to their actual diagnosis.

I'm autistic (diagnosed with Aspergers) and am in a support group where a few members are self-diagnosed, and I just wanted to put another perspective to those suggesting that self-diagnosis is just people identifying with something they see as a fashionably quirky.

I don't think anyone's really said (apologies if I'm wrong) how incredibly difficult it is to get an autism assessment in the UK. First step is your GP. Many refuse to refer e.g. I know of women who have been refused 'because you have friends/can make eye contact/have a job/went to university." There is a staggering amount of ignorance about autism, paritcularly autistic women, in the NHS. If you do manage to get a referral you might be looking at a wait of up to 3 or 4 years in some areas. Then I've heard of women who've got to the stage of an initial telephone consulation and been refused a full assessment for various money saving reasons similar to above but often with no reference to the actual diagnostic criteria. Some will go private but the cost can be over £2000, and some GPs will then refuse to put a private diagnosis on your NHS records, even if the same psych has a contract to do exactly the same assessments for the NHS.

So my experience of people I've met who are 'self-diagnosed' is they are usually people who have spent their lives suffering mental health crises and not understanding why they are such misfits. Finally they read about autism or someone suggests it to them, they read everything they can lay their hands on, realise this finally explains their whole life, but then come up against the brick wall of the NHS and probably can't afford to go private. That's why many autism groups accept the validity of self-diagnosis, not because we want more people to join our fashionable club!

This is the sort of thing the NAS should be publishing.

Very moving account from a mother:

pitt.substack.com/p/to-my-daughters-therapist-you-were

@likearoomwithoutaroof

I agree entirely with what you have said.

The only thing I would add is that my DC who is autistic presents as ‘high functioning’ (sorry I know this is a controversial term but for sake of understanding that’s what I’ll use here), attending mainstream school, has friendships and hobbies. But. And it’s a big but. When overloaded, when in a meltdown presents very differently. Language is lost, capacity is lost. It literally just goes. At that point requiring a high level of care.

It horrifies me that there is a link and a push to link autism with trans ideology. My child’s diversity is not to do with ‘gender’ (whatever the fuck that is). It’s to do with the brain, the view of the world and the sensory processing. It is NOT because they were born in the wrong bloody body.

It’s a bit like it being more acceptable to be “born in the wrong body” than homosexual in some very homophobic societies. People do what works and what soothes distress. What are we doing that presents “being born in the wrong body” in the face of all scientific evidence as easier than being autistic or homosexual?

@5zeds
“born in the wrong body” presented as a better option than “neurological disability”

That's a really interesting way of putting it. And especially for teenagers, feeling the usual social pressure to fit in, the idea that your body can be "fixed" so you can fit in with society and feel you belong - that's an attractive option.

Strangely though, my kids talk with disgust about research that could potentially lead to autism screening and they don't think that autism should be "fixed".

I’m fascinated (in a horrified way) that not only is “born in the wrong body” presented as a better option than “neurological disability” for both children and parents, but people also don’t seem to question that. It (IMO) throws a light on a hierarchy that I wasn’t aware of.

Let's not forget that Mermaids claimed that a diagnosis of Autism could be a sign a child was trans. This targeting has been going on for some time.

I absolutely agree, there is a massive problem with calling all experiences, across the spectrum, 'autism'. Perhaps this is something that's currently changing, though when 'Aspergers' was removed from DSM 5 that didn't really help...

LemonCheesecake and indeed any other adult here who has autism, no offence meant by my post.

I completely get what you're saying here.

My (5 year old) child is diagnosed autistic and I am awaiting assessment myself but fully expect to be diagnosed. My child masks expertly, is academically advanced but able to do well in mainstream school with support. She has her struggles of course, life isn't easy for her and we make lots of adaptations to help her. She should, we hope, be able to live a 'normal' independent life as an adult, just one with an understanding of her condition and the ability to make adjustments herself in order to manage.

I am a fully functioning adult. I had a successful career pre children, I can drive, I own a house, I'm in a happy marriage. I have a 'normal' life.

To compare my child (or me) to yours is insulting to yours and you quite frankly. Autism is indeed a spectrum, and it is all one condition but I cannot and would not ever consider our struggles or worries to be comparable to yours.

I'm glad there are more later diagnosed adults now who are able to speak up and say 'actually, we're autistic too and just because we function well doesn't mean we don't struggle'. For me, that's a great support. Its recognising children like me daughter too, who don't fit the stereotype. However, what is being lost is actually the fact that there are also lots and lots of people for whom autism isn't something that they can function normally with. It's a lifetime of care, a profound disability.

As for the whole gender/sex stuff. I've already decided that unless something major changes between now and my child being old enough for these lessons in school, she won't be attending them and stuff the consequences I don't care. I'm happy to teach her myself what being trans is and what it means, but I will not have her told it's possible to change sex or have her led into thinking that maybe 'ooh that's what's wrong with me, that's why I don't fit in!'. No. It's so easy for an autistic young person to be led in this way and I won't have it.

I wonder what people think would have happened to Asperger and his patients if he hadn’t joined the nazi party?

Probably. Not sure it's possible now though and no idea to what!

it would help my extreme irritation around frequent mispronunciation of the word...

Would it have been better to have changed the name 'Aspergers' rather than blend diagnoses?

PPs have referred to BPD earlier in the thread, but I cannot tell if they mean Bi-polar disorder or Borderline Personality disorder? The latter seems much more commonly diagnosed these days amongst teens (in our circles at least).

For my autistic kids, the world is horribly ableist. There is only so much accommodation that can be made to ease their way in the world and often those accommodations are not enough to avoid or quell the physical discomfort/ inability/ pain of having to live in the world.

Mine reject the term Aspergers because of its Nazi roots. And one child has become keen to not see their autism as a disability, because they can mostly adjust to the world and they want to be "normal", just like many teens.

One child of mine is trans but doesn't accept that their feelings of "strangeness", "not feeling like a girl" are likely due to their autism rather than actually being born in the wrong body. But the trans ideology neatly fits in with their autistic way of thinking and provides a solution to the problem, so voilà!

You're absolutely right lemon.

Some of the pupils I've taught have amazingly creative minds and the "flexibility" theory doesn't apply to them.

Coming back to the Op, these are vulnerable young people trying to find their fit in the world, and the trans brigade are preying on them.

Diagnosis is about identifying populations. I think if you squeeze two diagnosis together (merge boxes) it doesn’t necessarily benefit all the contents and it makes it harder to find things.

Elephantsparade I guess that is why they merged them although I think communication was more of a deciding factor between autism and aspergers. High functioning/low function referred to the diagnosis of autism only not aspergers.

When the new criteria came in it was suggested that some people with Aspergers would fall out of the autism diagnosis - it was suggested they should be 'grandfathered' in. But in reality I think that end of the support needs spectrum has stretched up and more people with lower support needs are getting diagnosed. Most do not have classic autism. Most now fall into the criteria that was previously Aspergers. And, aside from those who self diagnosed, autism advocates tend to fall almost exclusively into this group. It is one reason they are so disparaging towards parents and carers.

I think the issue is people dont fit well in boxes so there is a lot of peoole who would sit on the cusp of either diagnosis. My son would probably get an aspergers diagnosis i think because he has an IQ over 80 and can talk and use a toilet so isnt severe or profound. He can read too.

But he goes to a special school where he has 2:1 support and spends a lot of time hand flapping, rocking and tip toe walking hasnt got a great concept of his own safety.

But Lemoncheesecake shows why Aspergers was so helpful as a diagnosis. Trying to advocate for LFA/classic autism is met with these accusations 'but I am hugely disabled too!' 'you are saying I don't have 'real' autism!'