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 taught for forty years in special schools, and have seen the terminology change to become less helpful.

Many of the children I taught in the first decade of my career would now be said to be autistic. Back then (ugh) they were called educationally sub normal. Thank goodness that term disappeared, and learning disabled became the term.

As the awareness of autism grew, learning disabled with autistic features, was a regular diagnosis. Which I think was helpful. Now however, even the most learning disabled of children are often simply referred to as autistic, without any reference to their learning disability. Which is where you are now.

For the practical purposes that you refer to, In your situation I'd tell people that he has a learning disability/is learning disabled. If the conversation goes further you can explain that autism is part of his disability.

I think some distinction would be useful. I was diagnosed with autism a few years back, my psychologist told me that I fitted what would have been the Aspergers diagnosis but that it wasn’t used any more. Obviously I have struggles otherwise I wouldn’t have been diagnosed, but I am married, hold down a full time job and am worlds away from others like the OP’s son, yet our ‘label’ is the same. I don’t think it helps either of us. I don’t feel like it’s minimising my difficulties to acknowledge like many have it harder than me. I also really don’t get all the online #actuallyautistic ‘love my autism’ people who are so vocal about any perceived slight on their condition, but then I have no desire to make autism my identity either. The ‘self-diagnosed’ people can do one as well…

No! That's no doubt why DH relates to him.

Anyway, I agree with the general point, that the current diagnostic system doesn't help know what to actually do to make DCs' experiences better.

I agree. But I don't know what the answer is.

I miss the Aspergers diagnosis too. I wonder if they'll bring it back?

It does happen in other medical conditions too though. Diabetic, big Difference between type one and type two and that really pisses me off.
Plus it is almost a spectrum because some people have diabetes very badly and some people it's not too bad - mine is extremely brittle, invasive, and very difficult to control even though I know all the rules and try daily, so that is incredibly irritating.

I like "high functioning denies support and low functioning denies agency". That's very astute.

DH struggles enormously with many emotional and social aspects of life but the whole 'went to Cambridge', married, gainfully employed thing (plus the fact he's a champion masker) mean very few people know the real him.

His attributes and struggles aren't all that useful for DD either as she's not interested in book learning and people expect much better social skills from girls.

@SwanShaped

I agree with you. I have worked with kids with autism and the way it affected them varied hugely. I don’t quite understand the removal of Asperger as a diagnosis. Other difficulties have sub categories of mild, moderate or severe so why not autism. It’s not to say that people with Asperger’s don’t struggle enormously but that the impact on their day to day life is different from someone who can never live independently.

My son had an Asperger's diagnosis. His autism is severe despite him being intellectually extremely able. He has just been let go from a supported internship for youngsters with autism because despite being one of the brightest he is entirely unable to communicate when needed (he can speak, his vocabulary was assessed at 99 th percentile, but he doesn't understand the need to keep his employers informed).

When he was diagnosed at 8 he would have appeared to have mild support needs. Really I think it highly unlikely that he will safely live independently. He doesn't wash, eat, change his clothes, tidy up without prompting. But can hold a debate about the Russian revolution or explain quarks or microbiology with ease.

That is why I am against this idea of severe autism being only the non verbal or the intellectually delayed cohort. The autism impact needs to be understood separately from the learning needs impact. It's not as simple as 'aspergers is mild autism', which is one reason why the category was done away with.

I read there may be as many as 6? 9? types of diabetes. In the future maybe they will drop Type 1 and Type 2.

The problem with levels is that they don't correlate to a spectrum condition. A person might be level 1 in one area, 3 in another and so on. As much as the term autism doesn't tell us much about an individual, nor does a level.

The problem with getting support is one of funding. Call it whatever you want, if the funding is not there, the need will not be met. I'd rather we worked together to increase funding, than fight for the scraps between ourselves.

I agree with you @wiklowarrior I think there needs to be more categories (labels) not fewer.

What age is your son? I couldn't see that detail. My son never met a milestone in his life. He didn't speak til he was four and half when he said quite clearly ''out. mine. room'' to his sister. His issue is demand avoidance and I think oppositional defiance. So not an easy child to parent. But although he does terribly at everything at school and couldn't talk til he was 4, he is not cognitively impaired. He's not high functioning because he never tries to impress anybody, ever, but like your son he had that curiosity about locks and door handles so I don't think that level of curiosity indicates a low level of cognitive ability?
My son used to get 100% in maths tests and 0% in everything else. Is that cognitive impairment? I can't decide. The label of autism never gives anybody the right impression about who he is or what to expect.

That's interesting, Susannah. I have regular conversations with DD's school (they're pretty good) but every time I find myself explaining that 95% of our parenting energy goes on eating, washing, sleep, uniform sensory issues, appropriate technology use, sorting out social issues and trying to do our own jobs - if she does 10 mins homework independently That's a bonus but it doesn't make the top 10 most of the time.

Oh and a lot of tidying or our house would look like it had been visited by burglars.

And the barely sleeping at all when anything exciting is planned (like Christmas jumper day 🙄).

Yes, I agree that the levels are imperfect. I guess they’re an attempt to capture the differential we’re discussing here.

Having just recently moved back to the UK and still in the process of securing support for my son, I’ve been looking through the local authority documents that set out banding for financial support for children with additional needs. Those are pretty useful in tying specific needs arising from autism to levels of support - there are multiple bands of financial provision so there very clearly exists a quantified understanding of different children’s needs that is over and above ‘autism’.

I agree with you OP. My father was diagnosed with autism a few years ago. He refers to himself as having aspergers. My sister now 33 years old sounds like your son at a similar age. Severely autistic is how it was described to me growing up. She had no speech, no risk awareness, never slept would attack me (usually I did provoke tbf) and stayed in her world and routines, placating us with 1 syllables as she got older to tell us what she wanted. I believe her official diagnosis says something like autism + learning disabled + behavioral issues. No idea of exact phrases but they did specify 3 different things. She lives in a home with other LD adults and a care team. She's very happy and settled but you can't compare her autism experience with my fathers - worlds apart. It is a spectrum with varying degrees of severity in different areas

It's really complicated isn't it. I don't know what the answer is.

My son is academically gifted. But I refuse to call him "high functioning" as his autism is incredibly disabling on all aspects of his life. He is on the verge of being kicked out of his third special school because nowhere can meet his very profound needs. He is unlikely to ever be able to live independently. For the same reasons I would be uncomfortable using the Asperger's label for him as it, rightly or wrongly, is associated with Sheldon Cooper types. Neither 'Asperger's" nor 'high functioning" describe my son's autism

But I know his challenges are different to children like the OP's son, and I don't know if it's helpful for anyone that their diagnoses are the same.

My DS was given an Asperger’s diagnosis originally, but even that came with its stereotype or assumptions e.g maths genius, computer geek, Chess geek etc. Also constantly had and have people tell me their friend’s aunt’s brother has autism and he went to Cambridge/is a tech gazillionaire etc, which can be frustrating.

My son is ‘high functioning’, but his life is extremely limited because of his issues and needs. It is uncertain whether he will ever be truly independent, which although I appreciate isn’t the same as having to provide constant supervision or intimate care or feeding etc for a more disabled you g person, is still a massive source of worry.

My DS received an additional diagnosis of Pathological Demand Avoidance in his teens, which was a blessing and a curse. It helped get him a more appropriate school place on one hand, but on the other it’s a hard diagnosis to explain to anyone who isn’t a SEN specialist.

I think the only real answer to all of this is that people take diagnoses as a very general indicator of need only. No two autistic people are the same.

I find it really difficult to have to explain every time. I know that I have to, because if you don't, people make huge assumptions, usually wrong.

I find filling in forms, explaining over and over again really distressing, but DS describes himself as Aspie because he knows the sub group that pretty much describes.

Interestingly, the paediatrician wasn't at all sure, and in his referral letter said he thought, if anything, he'd be level 1(Aspergers), whereas the psychologist who did the assessment actually said he was level 2 for a lot of areas, because he was so impacted by his traits.

So even within paediatrics there is a lot of confusion/ misunderstanding.

In Oz as per pp, we have descriptions of Levels 1 to 3, combined with verbal/ non verbal, and one or two other descriptors. But even then it only really works talking to doctors. Teachers, and everyone else, still wouldn't really know those groups of words.

We've only really got serious and productive help since he was described as having severe anxiety, and suicidal ideation. Those mental health issues were entirely caused by trying to "be normal", and his school making him feel he had to ignore his feelings, even when it made him ill.

I'm torn because, on the one hand it's very reassuring to be part of the autism positive community, where our knowledge, and language/jargon is informed by autistic adults, rather than NT people telling us how my son feels/ should act. BUT it means that similar pressure must be brought to bear on those responsible for diagnosing, for policy, and funding of those who's autism includes disability.

I strongly believe that there are those who's only "disability" is that the world isn't made with them in mind, making everyday activity/ interaction exhausting, confusing, different. Where, if they're alone,
or in an environment they consider safe, they blossom like they've been waiting for rain. There there are those who are truly disabled. Physically impacted by feeding, toileting, verbalising. Shut down in a way that never, or rarely resolves.

There is, I think, a difference between "differently wired", and something pathological, where the gap between comprehension and functioning is just too great.

Yes, I think there should be more descriptors, no, I don't think we should go back to using Asperger's.

Apologies in advance if I've ill-phrased any of this, sitting in semi darkness, waiting for my autistic teenager to go to sleep!

I do agree op. My ds has Asd and the amount of people that say awww you'd never know, or, lots of Dr's and surgeons have autism you know! It's such a wide blanket of a diagnosis it's frustrating. And it actually seems to becoming quite trendy for adults to diagnose their quirkiness as autism 🙄 I don't know what can be done. Surely when autism is diagnosed, there could be different terms for deciding what area they most fit into, like Aspergers which doesn't seem to be used in diagnosis anymore, but it is helpful I think. High functioning and low functioning etc, it's not the best. My ds would be classed as high functioning, but I doubt he will ever live away from home. He can't risk assess, no awareness when out of the home, can't sleep and definitely can't sleep alone, very fixed interests, hardly eats apart from a few select things, gets angry very easily if things don't go to plan, I could go on. But his teachers think he's fine because he masks at school and because he's ace at maths 🤦‍♀️

@SusannahHolmes that makes total sense. I’m still in favour of some more differentiation but I can see why it shouldn’t just go on whether someone can talk or not. Sounds like a tricky time for him with his placement.

When you have met one person with autism you have met one person with autism. It’s way too unique in every case to try to put people into boxes, that will just create more stereotypes and assumptions not less.

Problem I have is that some people who want to subcategorise autism because severe autism is ignored are perfectly fine with lumping everyone who can speak into a big pile of 'mild'. The only difference between autism and Asperger's is that in Asperger's, there was no language delay and normal IQ. As long as you could speak by age 3, you had Asperger's. This also led to the idea that Asperger's is exclusively a social communication disorder, unlike autism. This is just not true. My family ranges from living sort of independently to full-time care and all of them are fully verbal. But saying 'Aspergers' makes both people in the community and health professionals think that the only problem this person has is one of being awkward at parties and talking about trains. Which might be the case, but often it is not. Without the Asperger's label, you at least get a chance to be verbal and also have high support needs. It still doesn't work in practice, but I don't think bringing the distinction back the way it was would help at all. It would really suck for all those people in the middle who are neither just socially awkward or in need of 24/7 care.

I wonder how this works with Down syndrome? That is also a spectrum and some people with the condition go on to university and some are in care for life. Do they differentiate? I have no idea.

[quote SwanShaped]@SusannahHolmes that makes total sense. I’m still in favour of some more differentiation but I can see why it shouldn’t just go on whether someone can talk or not. Sounds like a tricky time for him with his placement.[/quote]
I'm very verbally articulate - hell I'm an ex teacher and currently finishing up training as a SALT - communication is a huge element of what I do. I'm also waiting for my own ASD assessment - I scored highly on AQ and various other screeners, was waiting to try to get seen by uni's team but I'm likely to graduate before I hit the top of that list so I've scraped together the money to go privately.

I communicate well - but when I'm overloading - my ability to construct coherent sentences and speak buggers off entirely and words turn into overcooked spaghetti that I'm throwing around in frustration hoping that some of them land in some form of sentence that makes sense. I'm still inside trying to direct the orchestra of delinquent word pasta and getting bloody irritated with it - which makes the feelings of being overloaded worse and in the end I need to just find somewhere to get everything back in some form of balance.

Being able to speak isn't really a good barometer. I've had numerous (very friendly) conversations with school staff and the school head who admit they'd never have noticed DD2's language disorder (apart from her quirky speech) unless I'd flagged it up to them and given them SALT reports - she has huge gaps in social communication skills which are typical of ASD but also large areas of higher level language understanding which are just not there - I'd noticed them and got her an in-depth assessment - but she hides them so well and she would have probably got past me masking them for a good few years more if it wasn't from my own background.

I agree with you and most medical conditions are actually graded even if it’s a grading used mainly by HCP when treating them. E.g. if you have heart failure you would be graded based on symptoms and impact on functioning. There are lots of unseen disabilities which make life more difficult and need support, I do think you need to identify those whose functioning is the most affected.

@WilliamofBaskerville

I think some distinction would be useful. I was diagnosed with autism a few years back, my psychologist told me that I fitted what would have been the Aspergers diagnosis but that it wasn’t used any more. Obviously I have struggles otherwise I wouldn’t have been diagnosed, but I am married, hold down a full time job and am worlds away from others like the OP’s son, yet our ‘label’ is the same. I don’t think it helps either of us. I don’t feel like it’s minimising my difficulties to acknowledge like many have it harder than me. I also really don’t get all the online #actuallyautistic ‘love my autism’ people who are so vocal about any perceived slight on their condition, but then I have no desire to make autism my identity either. The ‘self-diagnosed’ people can do one as well…

There seem to be so many more people getting the autism diagnosis these days. In my day I thought of autism being the condition of the more severely affected like OPs son and Aspergers for those slightly affected but could lead independent and in some cases highly successful lives. There surely needs to be some categorisation and perhaps a category for those in the middle too. Not helpful to bunch all together.

In OPs son's case, there may be no intellectual disability. It is just that his autism is so severe he cannot access the learning needed to develop the intellect as we conventionally see it.

OP - it must be so hard for you and the broad categorisation of autism is not helpful.

its frustrating.. there's a lot of neurodivergence in my family, and we all have different levels of functioning, unhelped by co-morbids of other issues such as ADHD, ARFID, SPD, Dyspraxia, Anxiety....etc.

I genuinely think that differentiating via the required support level is probably the most functional way to split the field.

Why exactly was the Aspergers diagnosis dropped?

Because it just falls under Autistic Spectrum Disorder/Condition now. ASD is an umbrella term.

I also hate the term 'Aspergers'. Hans Asperger was a terrible person that was part of the Nazi regime. He basically sent children to their deaths if they weren't "high functioning".