Cont (2) autism diagnosis and descriptions

[OneFrenchEgg]

Continued from previous thread

Yes, agree with this. Aspergers and autism were merged because it was realised that there was an overlap between the two. Some of those who had language delay as well as other issues as young children (and who were consequently diagnosed with autism) had IQs in the normal range and developed speech later on. They were then pretty well indistinguishable from the group who had no early speech delay and who were diagnosed as Aspergers.
The widespread public awareness about Asperger's link to the Nazis was somewhat subsequent to this - it wasn't the reason Aspergers was merged into autism.
I do agree 'autism' on its own is too broad a descriptor to be very useful.

Thank you! Will look into trusts

Under the old system my child would have been given an Asperger’s diagnosis because they didn’t have a language delay - they were actually early with speech. However, nothing about the way their autism presents is stereotypical ‘Aspergers’. I feel like often people see as Aspergers as a less severe form of autism which isn’t always the case. My child’s autism affects them severely in all areas of their life. For that reason I was pleased that they were given an autism diagnosis

I also think it’s hard to categorise someone as high or low functioning or mild or severe because needs can change over time. The child who thrived in primary school may fall apart at secondary school. I know an elderly gentleman not diagnosed until he retired. When able to focus on his incredibly niche complex job he coped well but once retirement hit his world fell apart. My childhood friend had selective mutism and required 1:1 support at school but is now very articulate and successful.

I must admit though I get frustrated sometimes when people don’t understand how hard I find it at times because they know/have a child with autism who does xyz. That’s great but my child is like a 15 year old toddler.

I also think it’s hard to categorise someone as high or low functioning or mild or severe because needs can change over time. The child who thrived in primary school may fall apart at secondary school. I know an elderly gentleman not diagnosed until he retired. When able to focus on his incredibly niche complex job he coped well but once retirement hit his world fell apart. My childhood friend had selective mutism and required 1:1 support at school but is now very articulate and successful. None of these sound anything like someone I would imagine when someone says “severe”.

Sorry none of these sound severe. I've just spent an entire day supporting someone who cannot cope with any "imperfections" in the environment inside and outside. Even a branch falling can set off major anxiety They have destroyed everything in the immediate area the whole room is bare , they were pulling up the lino floor bare handed for hours because it feels wrong. There's nothing I can do if I attempt to physically stop them I will get punched and bitten.
Some cannot abide wearing clothing they rip everything and will sit naked they have to wear specially made rip proof clothing out in public.

This is the side of autism people don't see.

That paragraph was illustrating how someone’s needs may change over time. I wasn’t trying to describe severe autism. I didn’t discuss the individual particulars so not sure how you can say it doesn’t sound severe when I’ve not actually described anything. It doesn’t ‘sound’ anything.

Asperger’s implies an IQ over 70 and that you are verbal. People who hold down jobs, aren’t diagnosed till adult, or can manage in a ms primary school may have very hard lives but are not (imo) ever going to be “severe”.

That’s exactly the point I was trying to make

Asperger’s implies an IQ over 70 and that you are verbal

My child has an IQ over 70 and had no language delay he would’ve been diagnosed Aspergers under the old system. I feel this would’ve given people the misconception that his autism is mild. It is not mild.

I do understand what you are saying about people who get diagnosed as adults who held down jobs never being ‘severe’. It does frustrate me sometimes that there is no descriptor to distinguish between the autism of someone like say for example myself and then my child. My child is clearly more severely affected.

However, the elderly gentleman I referred to is at this time sectioned under the MH act as he is currently severely affected by his autism. But I guess you could argue his relatively ‘mild’ autism has severely affected his MH which is perhaps not quite the same thing as ‘severe’ autism. I don’t know - is that just semantics?

Also the whole verbal/non verbal thing. What does that even mean. You can be verbal but unable to communicate or you can be nonverbal but able to communicate well through nonverbal means of communication. I don’t think whether or not someone is verbal is a good indicator of how severe their autism is.

Hope no one minds me joining in.
DD began secondary school this academic year and is really struggling. She didn’t find KS2 easy (fine when she was little) but this is whole different level tricky.

She has a real aversion to growing up and is trying to hold onto things younger children enjoy (tv programmes, desperately wanted build-a-bear recently and so on). Is this linked to the dislike of transition in the short term (school to home, etc)?
There are wider issues, but I wondered if anyone had thoughts on clinging onto childhood?

I really do think we need another word for less severe autism - or autism which does not have any significant developmental issues. Whether it’s Asperger’s or another term I think we need it as everything - research, support, articles, media is centred on the functioning more adult or later ‘diagnosed’. Centred being the word.

I have been on several influential groups in neurodiversity and it’s like banging my head. I’ve been on some groups that were specifically set up (talking high level professional groups) for non-verbal or non-speaking - and then just ended up being about masking and older women.

I have gone on until I made myself hoarse talking about learning disabilities - and the neurodiversity movement absolutely does not include this group. They say it is a ‘co occuring condition’ - which for sensory or anxiety issues is OK but apparently not learning disabilities which are very rarely even mentioned.

I’ve been on these groups to represent kids like my son, severe (told not to use that word by neurodiversity forums), non verbal (told not to use that word again even though no my child did not understand language either so was not non-speaking), major delays such as motor delays (people in neurodiversity movement actually look at me strangely when I say how prevalent motor skill issues are in autism).

And the tragedy is these are not awful people, everyone I’ve met in the neurodiversity ‘camp’ including many autisitic people, professionals, teachers, researchers, are well meaning, capable nice people. Yet I see any ‘place’ for my DS being crushed. Even though I am autistic myself I don’t really bring this up as what I have is not the same as DS, I didn’t spend most of my life in nappies or trying to hold a pencil. My DS should be centre stage of autism.

I don’t think whether or not someone is verbal is a good indicator of how severe their autism is. forgive the irony but I have no words to this! Honestly I feel myself rage and these kind of statements. How dare you say that not being able to understand or speak language is not a major, significant, severe and horrible issue for people. I myself could always speak but DS…

and so many others like him. Of course he is more severe than someone who can talk. Because they can talk! Huge bloody difference in severity.

Completely demeans my sons difficulties. You spend years with a poor kid who is trying to talk but can’t, trying to understand but can’t, then come back and say it isn’t as severe as someone who can. 😞

PearCrumbleCustard wishing you and your son all the best. Your experience confirms to me why it inevitably causes avoidable problems and burdens when a single umbrella term is used to describe a circumstance with huge variations.

Naturally among those affected, those who have the most ability to advocate for themselves will come to dominate the discussion, because they are literally the most able to do that.

There’s nothing wrong with anyone talking about it but that’s the effect of what they are doing that, its literally impossible that all voices can be heard equally. And then from that point the full variation of experience and disability lumped in under the umbrella term becomes less visible. Over time the external perception and therefore definition of the circumstance by the wider world naturally becomes focused on the ‘more able to advocate’ group.

Its just basic human nature, group dynamics or whatever, repeated everywhere through the ages. I don’t understand why it’s not thought possible that this could be happening in regards to the full variation of personal experience and also disability, found within the modern usage of ‘autism’. Or why that isn’t though to have created risks for autistic people.

It’s not even that (in some cases) that the ‘most able to advocate’ or the most visible group are winning from this situation. My diagnosed autistic DC are told by peers, as am I by friends and close relatives that the DC ‘can’t be autistic’ because they can eg speak and briefly look people in the eye. That ignorance has a gaslighting effect on my DC who do have substantial challenges in other areas.

I feel it’s just yet another aspect of the avoidable burdens and inaccurate wider expectations that using too-wide labels creates for the people affected. I’d be really surprised if this current naming cycle doesn’t move on and new more-specific terms don’t become used, in a few years’ time.

It's never semantics , I work professionally in this field . People with Autism can have other MH conditions including schizophrenia for example. Being unable to communicate effectively is severely damaging. The difference is someone verbal with an average to high IQ eventually will be able to share what is wrong and have a higher chance of good quality of life this is backed by research. Imagine the frustration of being unable to communicate your needs, PECs and communication boards only work so well.

There's also processing speeds , being only able to understand certain bits of information. It simply doesn't compare.

I thought research indicated the opposite,that those with an autism diagnosis are more likely to have depression and mental health difficulties - that is not a good quality of life . My dc’s diagnosis is hugely tied up with not being able to understand, articulate and express emotions, needs etc. Some people with autism can be mute without learning disabilities. There are also processing issues. That is not going to change, she has autism.

I got told off for describing my dd2 as having moderate autism. She was diagnosed at two and attends a special school. But she is verbal and can do schoolwork, albeit for children three to four years younger , so I don’t consider her autism to be severe .

Some of us talk but we do have great difficulty making ourselves understood and understanding language

Not being able to communicate is obviously going to negatively impact anyone and is going to impact the effectiveness of any support. IF Asperger’s is autism without LD or language delay then aspergics must surely see that there are people dealing with everything they do in addition to LD and/or language delay??
I would assume unless proved otherwise (and I doubt anyone will bother) that depression and other MH difficulties are across the board not unique to those that can tell you about it.
Are aspergics who have no direct experience of severe autism good advocates for those that are LD or language delayed? I’d suggest not.

DD went through a main stream primary school.

She is now unable to leave the house at 13.

She has never spoken a word to anyone but immediate family for years. Her IQ isn't low but her autism affects her severely.

Itisbetter

I’d suggest parents of those with LD or language delays aren’t the best advocates for “ aspergics” as you put it.

What an unpleasant way or referring to those of us with autism. My children and I are people who have autism. We r never been diagnosed as being an “ aspergic”

I’d suggest parents of those with LD or language delays aren’t the best advocates for “ aspergics” as you put it. I agree

What an unpleasant way or referring to those of us with autism. My children and I are people who have autism. yes lots of people are keen on people first language and lots see their disability as part of who they are so prefer to name it. Neither is intended to be unpleasant (I assume). Asperger’s is a diagnosis that is in active use in the UK if you haven’t received that dx then either your dx is very recent or you don’t have Asperger’s and aren’t who I was identifying.

@percypercypercy I think it’s been stated multiple times that you can be very disabled by autism/Asperger’s even if HFA. I’m sure you can imagine that your dds life would be very very different if she couldn’t communicate at home either? I’m not minimising her difficulties by saying that there are autistics who have even higher needs (quite a lot of them).

I'm not actually trying to argue her into a box here. It's the fluidity that I was meaning. That said I realise I am far out of my depth here so I shall step back.

I am interested in the 'manage in a mainstream primary school' bit. There is a child in my mainstream primary who is non verbal, doubly incontinent and has 1:1 support and does a totally different thing to all the other children with visiting salt and ot everyday You'd be amazed who is in mainstream primary!

My DC has autism that wasn't picked up until secondary school because of extreme masking.
I haven't read the previous thread so not sure if this has been shared already but this document on autistic girls/women who present 'internally' and cope well until very suddenly they don't is extremely informative.

autisticgirlsnetwork.org/keeping-it-all-inside/

I hope it's been shared with schools as some of the advice is invaluable. Whether or not they act on any of it is another matter.

@percypercypercy oh please don’t, I think your input is welcome and just as valid as anyone else’s. (And I have a recovering SM at home so am always interested in others who have that experience).

@Spendonsend yes of course there are many fairly severely impacted kids in MS but they are managing in ms school with support, there are autistic (and otherwise disabled) children who can’t do that, and I think they are likely to be more severely disabled.