Autism

[lolly07766]

I know there are many threads concerning this subject, I've just read one now.
I have a son with severe autism, limited communication and obvious learning disabilities, aibu to think the diagnosis/description should be changed for high functioning people, as opposed to those who have serious disabilities.

@Familyofthem being honest, I have no idea how to ensure it doesn't start A vs B or doesn't take account of profile. I do think separating profound autism is probably the easiest. I do think that a big key would be to increase the language that can be used without fear. I actually think that if the language we use hunt ge so censored the divide in the autism community may not be as bad as it seems. Maybe the best start would be to move away from the nd movement so that those with a dx are seen as having needs?

Surely everybody does ant some point,not everybody is fortunate enough to get a diagnosis quick.

me the really cutting idea that my child lives in some sort of happyclappy tele-tubby land and so has it easier because they don’t understand.☹️

this is one of the worst. I think someone posted this or illuded to this on this thread early on.

@Ca1mingC1arySag3 i think for me it would be a bit like finding a lump and telling everyone I had cancer without being diagnosed and going into support groups etc (nb I know ASD is nothing like cancer).

@Ca1mingC1arySag3 why does anyone need to self ID? Why can’t they say they suspect they have autism/are autistic or are waiting for an assessment? You wouldn’t self ID as having cancer, CF, MS… so why autism?

@SleepingSnowRedInBootsAndThePea It’s not unique to MN, unfortunately. And the person who called me and Punx toxic said they had a diagnosis.

@Familyofthem - that category is my child i believe.

I think the main issue for me is if you have disordered and delayed development which is what the autism parenting course kept telling me was part of autism, you dont really know until you've finished developing quite what the outcome will be. The spiky profile is also something that makes it hard to 'box' severity neatly.

I am trying to work out if I would be happy for my son to have ' disordered and delayed neurodevelopment disorder' which then at 21 was reaassed to get a final diagnosis. Not sure

In terms of final diagnosie I was thinking Spiky Autism

Profound autism would imply all impairments, all the time at a high care needs level. Spiky would imply to people that they need to find out more about the impact on that individual.

I am less sure, but maybe a Neurodivergent autism for people who can manage their condition themselves but need the qualities act to enforc the adaptions they need to function or to access PIP to help pay for things they need but who generally feel positive about their difference

Because it’s incredibly helpful.

@Familyofthem that would include one of my DC. If there was to be a split I don’t know what I would use but he also has a medical condition and on things like clinic letters etc. it uses “ASD with a high level of support needs” or “significant ASD with comorbidities of…”

@Ca1mingC1arySag3 how is self ID’ing any more helpful than saying you suspect you have autism/are autistic or waiting for an assessment? Would you self ID as having another serious diagnosis?

Surely it would be more helpful to say you are awaiting diagnosis than you are already diagnosed if you aren’t?

Because knowing there are reasons for things is helpful. I 100% knew I was and I was right.

i don’t really understand that logic

Glad this thread is heading in a more constructive direction. It seems we have a lot in common and should focus on that, rather than the differences. My position is

• I have absolutely no problem with the use of an appropriate descriptor (eg profound) as I completely recognise the need for people to understand the “type” of autism
• I think it is important however that the other end of the spectrum is not seen as “mild” as this does those of us with Asperger’s (that is my diagnosis) no favours. I am not affected mildly. My school years in particular (obvs no diagnosis) we’re just awful. I feel very sorry for me as a child and a teen. Other kids are horrible.
• I really dislike self ID and in fact for me, there is no way I would have EVER self-diagnosed. I needed to know officially. I cannot imagine any genuinely autistic person being happy with a self diagnosis (though that just be me being able to put myself in others shoes?). Self-suspected is different.
• further, think self ID does a huge amount of harm. “I’m a bit quirky me - must be on the spectrum”. Fuck. Off.
• for me, it is a disability and not a superpower. That said, it is me and how I am so whilst I wish I could change some ways I am disabled (absolutely crippling anxiety, shutting down/melting down and looking pathetic, being completely misunderstood and generally rejected socially), I also like the way my mind works at times - I’m a scientist and I can see engineering solutions quite easily sometimes. But that is a very internal “yay me” - it is not externally validated.

id also just like to say that I have not had any access to public resources. I have paid for all things that help. So from my experience, I do not take away any public funding from the one who require considerable life support (but suspect this is woefully underfunded in any case)

I am open about my diagnosis, but that’s because I don’t want kids who are like kid-me - particularly girls - to go through what I did.

I hope none of this offends anyone. We all have our owns struggles - they are very real but also very different. for the individuals, and their families/carers, life can be hard and cruel. I hope more understanding helps change that.

Me neither.

@Ca1mingC1arySag3 why can’t you just say you suspect you have autism/are autistic or awaiting diagnosis? That equally shows you think there is a reason.

Itisbetter

You don’t have to because it’s not about you. Thankfully we can all do as we please on this journey.

Isn’t this the problem with all developmental conditions of unknown cause? How can you have more accurate and clearer labelling of something that is obviously still so poorly understood, even by those taking a specialist interest in it? Also, does a diagnosis gain or lose credibility in the eyes of the general public if it has to be revisited and recategorised every few years, as the diagnosed person goes along their own, unique, developmental pathway? And how to deal with delays in recategorisation, if previous diagnoses end up inaccurate and unhelpful, which ironically is more likely to happen the more precise and accurate-at-the-time-of-diagnosis you attempt to make your diagnostic labels? Is the label being used to cover such a wide range of differently affected people the real problem, or is the real problem attempts to simplify something hugely complex, with multiple possible causes, into a few words, which is really just asking for the impossible?

The real problem is identifying prognosis with such I diverse group, finding out what helps and where you are going is the whole point of dx in my opinion, it’s not a club.

I think self ID’ing does affect other people with autism and by association parents/carers of those with autism. Would you self ID as having another serious diagnosis?

Even with a diagnosis, prognosis is a big ask for anything, unless you have an imminently terminal, or quickly treatable, condition.

I think it would be extremely difficult to diagnose yourself accurately, especially if you are older and have lived a nt life for a long time. Oddly all the autistic people I know struggle with lies/half truths so I can’t imagine them doing this.

Yes but you CAN track things if you can identify them. For example some HFA and Aspergics are very similar as adults, some HFA never gain confident use of language. Can we see a pattern in their development? Can we see markers that might point where they’re heading? Can we quantify the likelihood of outcome? (So Eg would we be able to give a percentage that gain speech/remain isolated? Could we say that X sort of education increases more positive outcomes?)

Well yes, that is what the experts do, though, isn’t it - they look for patterns to justify diagnoses? The result has been a widening rather than narrowing of the diagnosis, so presumably previously detected characteristics were found not to follow a clear developmental pattern.

they look for patterns to justify diagnoses? The result has been a widening rather than narrowing of the diagnosis so is that WHY the dx were merged?

Its quite interesting if you read articles and papers on why they were merged. It seems the early language delay wasnt a great predictor of anything long term which seems so suprising - the outcomes for HFA and Aspergers groups were very similar when other things like iq were comparable. It also sounds a bit like which one you were diagnosed with was a bit arbitarty.

@Cuckoosheep I don't have the answer either. I get some parts of the ND movement, because I see it similarly to Deaf culture in a way, but I also struggle with it, because I think it tends to minimise actual difficulties and turns them into a mindset issue. I am privileged in that I am able to work, with adjustments at both work and home, and a couple times when I've changed jobs within my organisation I've been subjected to a review of my adjustments, which often include coaching sessions on how to 'succeed' in the workplace as a neurodiverse person. These sessions are always with some overenthusiastic therapist telling me that I should just think positive and celebrate my uniqueness instead of thinking of ASD as a disability. It doubly offends me, because first of all this does jack shit to allow me to keep working, and secondly, I don't have a negative self image and saying you are disabled is not a sign of depression. Most other people I've met in work who are on the spectrum seem to dislike thinking of themself as disabled, so I feel like I don't belong.

@Spendonsend interesting, thank you for replying. If I may ask, what is an autism parenting course like? Is it all the same regardless of your child's support needs, or is it more tailored than that?

I wish I knew more about what my mum was like as a child. She's judged to be of normal intelligence, but her understanding of the world is not where it should be as an adult. She can't tell when someone is taking advantage of her, or when she's being inappropriate. She has no concept of risk or boundaries and she can get violent, but she is very animated and talks all the time. She now knows she has ASD, but she doesn't really understand what that means.

Well said Scautish.