To think there needs to be a clearer diagnosis than just Autism?

[wiklowarrior]

As in, 'Autism such and such'.

I'm a professional woman, had a good job (before becoming a carer), married, nice home, friends. I'm also autistic, which was once diagnosed as Asperger's (and is what I was given). That's no longer the case now. As a child, I was eccentric to other people, always played alone, unless my nightmare routine was disturbed. Spoke extensively about my favourite things in great detail. Then you'd see more obvious signs. Overall though the entire thing leaves me exhausted. It's the masking that does a lot of that.

DS was diagnosed with autism before he was 3.

He can't speak a single word, and doesn't respond to simple language communication such as 'Get shoes'. He is a complete flight risk, would run into roads in a flash. He is in nappies. Never been able to toilet train him, despite numerous efforts (of which were all very obvious weren't going to work, because he does not communicate and doesn't seem to have a desire to). He is hyperactive, climbing another danger. He runs face first into walls. Attacks me, attacks other children and just anyone really. He destroys most things I've ever owned really. But very clever at working out locks and reaching high places. I see the frustration in his face every day and it breaks my heart. My own autism is exhausting.

Can you imagine then if I couldn't speak a single word, have the ability to use sign language despite years of effort? Couldn't use picture exchange? Couldn't even POINT to what I want or need? It's obviously very much a harder deal for him. His autism is severe. And I think a label for that would be useful without having to go into detail in multiple examples of telling people about him being autistic.

He does not attend the local SEND school specifically for communication disorders because he's too disabled by his autism. He attends a very good special needs school for a variety of very complex medical and autistic needs and it's the best school for him.

Yes I know masking is hard, even for those of us appearing 'high functioning'. But at least we have the option? Surely? DS and others like him don't.

I think there needs to be a distinction so that people can access appropriate support. The support that the op needs is completely different to what her son needs. And this happens a lot in school. I'll be told that a member of my class has autism but that label doesn't give me any indication whatsoever on what this child will be like. It's so varied. At least the label Aspergers tells me a little more.

Learning Disability in the UK is interchangeable with intellectual disability

In our area, children with learning impairment will be diagnosed with ASD and a learning disability.
The best we can do, as parents of children with ASD, and/or those with ASD ourselves is to educate others who don’t understand what is mean by it being a spectrum condition.
My son is ‘high functioning’, intellectually very bright, but also has huge impairment due to sensory issues. He’s lucky if he can engage with 10 minutes of each lesson. He can become overwhelmed and frequently hits/bites his safe people (me, his sister, his TA). He bites himself too for sensory relief. He’s a runner - thank god his TA runs half marathons. He needs full time 1-1 support to cope with the school day, even though he’s exceeding in all his academic areas. It’s the same at home. We cannot leave him unsupported at any time for his own and others’ safety. Going out is an absolute nightmare -Covid has been a godsend for us in that respect.
Being ‘high functioning’ doesn’t preclude it being ‘truly difficult’. It’s also not a competition to identify whose ASD is ‘worse’ than others. It’s a spectrum, and far more complicated than Aspergers/ASD. Which is why the former is no longer given as a diagnosis.
The diagnosis of ASD with learning disabilities is, however, I think, a useful one.

There does need to be a way to differentiate. DC1 has a diagnosis of ASD, I have a diagnosis of Asperger's. I think it does help show that while we are both autistic that spiky profile means it impacts us differently. I realise this is only a quirk of the diagnostic nomenclature changeover rather than an intentional differentiation, but it is helpful.

Yes, I think this is about picking the word that works for the situation and audience. No-one else needs to understand his diagnosis, they just need to know the relevant piece of information.

So, 'sorry, he can't help it' might be enough, or 'sorry, he has learning difficulties', or 'sorry, he has a disability, he doesn't know what he's doing'.

@VividGemini

Learning Disability in the UK is interchangeable with intellectual disability

Can I use mentally disabled as a term, then? Because as you say, if learning disability is interchangeable with intellectual disability, that's even less clear than me saying Autism! Because Dyslexia is a learning disability. Even less comparable to autism (as a whole)

I remember watching a programme years ago called 'There She Goes'. The little girl in that was sort of similar to my son, just calmer - She has a disability provable by medical tests though, a rare genetic one I think

I think 'learning difficulties' is used quite euphemistically in the UK, to mean intellectual impairments. It's taken over from 'special needs' when that became perceived as am insult.

I agree, I work with students with SEND and the label 'autism' usually does not tell me anything about the individual concerned, their strengths or areas they find difficult. Teachers ask for guidance on working with these students and there is generic information but the best piece of advice I can come up with is talk to the kid and the family concerned because they're all so different.

Dyslexia isn't a learning disability, it's a learning difficulty

www.mencap.org.uk/learning-disability-explained/learning-difficulties

No, you can't use mentally disabled.

I completely agree with you op. We could do with a specific word that people understand for this kind of autism.

And @vividgemini I don't think this is correct:

IsolaPribby
Why exactly was the Aspergers diagnosis dropped?
Because its not a separate diagnosis. The only difference was the presence of intellectual disability.

You can be autistic without an intellectual disability but not be classed as what used to be aspergers. For example, there are non verbal autistic people who do not have an intellectual disability. (I actually know a non verbal autistic child who reads, writes, plays the piano but would not be classed as aspergers because he has no language. Please correct me if I'm wrong, not trying to be goady but I think that's right).

@cakeandcustard

I agree, I work with students with SEND and the label 'autism' usually does not tell me anything about the individual concerned, their strengths or areas they find difficult. Teachers ask for guidance on working with these students and there is generic information but the best piece of advice I can come up with is talk to the kid and the family concerned because they're all so different.

Your last sentence there pinpoints a bit of frustrating I get when reading about people speak of autism as a condition (not your fault obviously!) The national autistic society do it as well.

You mention 'talk the the kid concerned' and my mind goes a bit crazy. My son can't even say yes or no, doesn't recognise his name. To ask him how his autism impacts him, be it with speech or by signing, picture exchange, he can't do any of those things.

He has 0 communication other than pulling you to what he wants. He can't even point

This is what I mean by worlds and worlds away

Developmental disability was once used- is that term around now? It's broader than learning disability.

Part of the issue with the name 'Asperger's Syndrom' relates to Asperger having been complicit/involved with Nazi medical experiments.

I don’t think trying to come up with more specific labels would work because everyone presents so differently. It’s way too complex to try to narrow it into smaller boxes!

@parrotonthesofa

I completely agree with you op. We could do with a specific word that people understand for this kind of autism.

And @vividgemini I don't think this is correct:

IsolaPribby
Why exactly was the Aspergers diagnosis dropped?
Because its not a separate diagnosis. The only difference was the presence of intellectual disability.

You can be autistic without an intellectual disability but not be classed as what used to be aspergers. For example, there are non verbal autistic people who do not have an intellectual disability. (I actually know a non verbal autistic child who reads, writes, plays the piano but would not be classed as aspergers because he has no language. Please correct me if I'm wrong, not trying to be goady but I think that's right).

That's true but the main distinction in practice was (well still sometimes is) presence of intellectual disability, and the reason the it was changed in the DSM V was because of this.

My DS is an extremely good problem solver in fairness. He can't do any sort of maths. Can't do a puzzle (wouldn't have the focus). But he can open anything and everything he reminds me a bit of Hannibal getting out of those constraint suits and prison cells.

I guess that's just because he simply never gives up

He's trapped in his own world with 0 means to communicate really so he must have such a huge drive. I love him so much, just in case people thought I was being overly harsh about him

I'm just being honest

My son has severe autism. He does not have a learning disability and will likely not be diagnosed as such. It is his autism which is disabling to him.

I think one of the issues is that people who have severe autism aren't able to advocate for themselves due to the nature of their autism and those who are more able are able to advocate and have now become the face of autism.

The council for severe autism have posted something recently about lobbying for the diagnosis to be split again. I'll try to find a link.

Currently still cleaning up an 'accident' on my new carpets from 4am this morning...

Despite buying these magical sleep suits for disabled children that zip up at the back so they can't take them off

Still, he managed to get it everything and I've no fucking idea HOW because it was still on when I got him and the legs aren't very stretchy

@wiklowarrior

My DS is an extremely good problem solver in fairness. He can't do any sort of maths. Can't do a puzzle (wouldn't have the focus). But he can open anything and everything he reminds me a bit of Hannibal getting out of those constraint suits and prison cells.

I guess that's just because he simply never gives up

He's trapped in his own world with 0 means to communicate really so he must have such a huge drive. I love him so much, just in case people thought I was being overly harsh about him

I'm just being honest

I don't think you are being harsh at all. You sound like you have endless care and compression for your son and are desperate to have more of an understanding about why he is the way he is, so that you can support him as his mum.

Compassion*

I agree the diagnosis to be more specific. Maybe a qualification on severity, like mild moderate severe, which I do sometimes see on paediatricians diagnostic reports. Or maybe an insight into impact, such as hugh, medium, low support needs as mentioned above. I know it is a spectrum, but to me they are completely different: someone so shut in they can't point or do a picture exchange (this seems to be to be a communictative impairment, not intellectual btw) and someone who doesn't quite get a social nuance in the playground. How is the neurodiveraity argument supportive of the former? oh we shouldn't try to change them, we should accept, its just another way of thinking. They actually need proper support to function, without frustration or safety risk, in the world, and they are being overlooked in my opinion.

@CrumbsThatsQuick

I agree the diagnosis to be more specific. Maybe a qualification on severity, like mild moderate severe, which I do sometimes see on paediatricians diagnostic reports. Or maybe an insight into impact, such as hugh, medium, low support needs as mentioned above. I know it is a spectrum, but to me they are completely different: someone so shut in they can't point or do a picture exchange (this seems to be to be a communictative impairment, not intellectual btw) and someone who doesn't quite get a social nuance in the playground. How is the neurodiveraity argument supportive of the former? oh we shouldn't try to change them, we should accept, its just another way of thinking. They actually need proper support to function, without frustration or safety risk, in the world, and they are being overlooked in my opinion.

Yes you're so right there. I was watching Paddy McGuinness's documentary the other day (I'm not commenting on their parts as it's their family's experience so specific fo them), and I got quite frustrated watching that professor from Cambridge

He was like 'the best piece of advice I can give to anyone is to let the autistic person be themselves'.

Really? Let my son be himself then by allowing him to get run over, bite and hit, attack me (and put others in hospital from things like severe hits resulting in a broken nose), smear his business all over the house and everything we own, despite prevention

Yeah, just let him be himself

I agree with you OP. There needs to be something understood more clearly by the general public (and not only a medical professional/diagnostician) to indicate where people have a level of need that cannot be accommodated by adjustments without constant professional support. Eg in young people this might be the distinctions between those who can be educated in mainstream, those who can be educated in specialist SEND provisions for communication, and those who require the most specialised schooling for severe disability & medical needs. But I am sure this thread will be flooded with people who do not agree, and the consensus often seems to be that NT people are not entitled to an opinion.

@DeepaBeesKit

I agree with you OP. There needs to be something understood more clearly by the general public (and not only a medical professional/diagnostician) to indicate where people have a level of need that cannot be accommodated by adjustments without constant professional support. Eg in young people this might be the distinctions between those who can be educated in mainstream, those who can be educated in specialist SEND provisions for communication, and those who require the most specialised schooling for severe disability & medical needs. But I am sure this thread will be flooded with people who do not agree, and the consensus often seems to be that NT people are not entitled to an opinion.

I'm not NT and I agree with you wholeheartedly. I find it quite insulting that articulate autistic people, able to use things like social media and write articles, can say they don't want a distinction and it isn't helpful

It's ridiculous

I am a school SENCO and am often asked by prospective parents what adjustments are in place for children presenting with ASD. And it's impossible to say because each child we have with autism is very different, from the " you wouldn't know he has autism" child who appears absolutely fine in school but has severe meltdowns as soon as he walks out the door, to the throwing tables and chairs boy who is extremely academic but finds it impossible to sit in the classroom, to the " knows everything there is to know about dinosaurs but please don't ask as you will be there all day" and the child who, five years later is now using 4/5 word sentences. Yet all come with the same diagnosis. There must be SOME way of clarifying without parents having to explain, over and over they "type" of autism their child has. Some of the parents do find it extremely stressful and, when talking to parents with children with autism I always find myself ending up apologising that my autistic son has a professional career but theirs will never be out of nappies yet both have the same diagnosis.

Ncsa statement of changing the dsm and why it is required. Counter points to the comorbid learning disability argument.

www.ncsautism.org/dsm?fbclid=IwAR15MRfsTXr_wkQMWkSTEkMzeZxQswx5vE5p_1IK4tvtDcI-s0L85hvN6Dw

YouTube webinar on changing the dsm (which will lead to changes in the UK). The video outlines some vital points

lm.facebook.com/l.php?u=https%3A%2F%2Fyoutu.be%2FGVxE5RH0ycg%3Ffbclid%3DIwAR3ve_0sSy2_ZZbgSdF1kZzAr7htpXiHlibKnJ8Otw5Esb3h_9mbOfdhtK4&h=AT1BK6q2XqbBgQ3E3pj7ifN-t02j81XHcU1Mkc8gIQfVX_G2c3v4OEyAYQiNOAwx_IsQ3MVb98nZ3ljEgXXlQL9UEyRzmUTeVjWYwKZA-2fPJi6zYfLJhikQbHVtWMQiKWQs--Mt56CPULi6L-2L9p_s0UlUVF3TUTs