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.

@supermoonrising

Autism is a spectrum but it seems that over the last decade (with a few notable exceptions) there’s been a lot of programmes and media attention on people at the higher functioning end of the spectrum, but very little about people with more severe autism.

Unfortunately I think this has led to many members of the general public having a distorted perception of just how challenging autism can be on the more “severe” end of the spectrum.

This certainly describes me. I know a couple of autistic people who have very limited lives and need a lot of care. But I feel I have been re-educated in recent years to understand that autism is actually great and that people with it love it....... I've been very confused.

@SwanShaped

Thanks both, that’s interesting to know. I watched a programme last night about Paddy something or other, his family and autism. His wife got diagnosed by filling in a questionnaire.

That's not true. She pursued the diagnosis after doing screener forms.

I'm autistic and have ADHD. I have two DC who are autistic, one DD and a DS. They are twins. All of us present in very different ways.

My DD has a secondary diagnosis of language processing disorder - she doesn't have a learning disability but her receptive and to a lesser degree, her expressive language is several years behind her biological age. Incidentally, this was missed in school until she was 10 years old - getting her in front of the right people opened the floodgates and we realised just how much she'd been struggling, but masking. I suspect she has ADHD but the assessments are very male-centric so I think it's been missed. Preparing to take her back to get them to look at this specifically, just in case she needs meds (more common with ADHD than autism).

Her twin brother was diagnosed at age 4 (they're both now 12). He is still in nappies and couldn't manage mainstream - but academically he's bright. Technically not a learning disability - but very, very young for his age (he acts around 6 or 7 years old). He also has a diagnosis of dyspraxia.

I'm 46, have my own business, mortgage, relationship. To outsiders I'm functional and over the years have juggled many things. Internally I'm an absolute wreck with anxiety which is slowly breaking me. I'm newly diagnosed as autistic/ADHD - if/when I get prescribed ADHD meds I'm hoping it will help.

I don't know what life will hold for my DC. Will they live independently? I'm guessing DD yes, but DS....I have no idea. He doesn't have a learning disability but life overall is quite overwhelming for him. I really don't know what I should be planning for.

But I'm waffling on. My point is that an umbrella term of "autism" is great but so very non-specific. It tells others virtually nothing because the spectrum is so broad and diverse. Low/high functioning was a poorly thought out concept but that doesn't mean we shouldn't try to think of some other system that's more meaningful. An autistic person can be totally non-verbal but not have any intellectual disability. The Reason I jump by Naoki Higashida is a good book to provide some insights.

People will howl about ableism but being able to communicate quickly and broadly the degree of challenges an individual has would be bloody useful. We might not like the idea, but for some people autism is profoundly disabling, even without a learning disability. That's not universally the case for others. We do it for things such as anxiety or depression, so I don't see that it shouldn't be possible for autism.

The whole reason that Asperger's is not used anymore is because it led to a lack of support for those with it.

They use levels to describe the degree of impairment in the US, too. My mind was blown when I first saw someone in one of my FB groups saying “my child has level 3 autism” because it’s so drummed into us over here that autism is autism. Full stop.

My daughter has Down’s syndrome and autism and ADHD and I challenge anyone to work out which bits of her behaviour/impairment relate to which diagnosis.

I found 2reefs questions very insightful. If you asked these about my DD (8, intellectually able but very affected by ADHD, okish in groups but not always able to decode subtle behaviours, hyperactive, hypermobile, demand avoidant, sensory seeking) you'd have a pretty good idea how to engage with her at school.

Outside school she appears neurotypical outside the house, but inside can be aggressive, violent even. She has gradually switched to using words as weapons more.

This is pretty much totally different to what OP is dealing with but same diagnosis (plus the ADHD).

The point about life insurance I completely get though. I would hope DD would be able to live independently as an adult but I'm hedging my bets on that. I had her at 40 too!

[quote wiklowarrior]@VividGemini Sorry to jump on your response but what would you say to someone you're apologising to in public?

I often say 'So sorry, he's autistic'. And sometimes people are very nice and say 'oh such and such is autistic and they've just got into uni'. Or 'oh my granddaughter is autistic and she works at such and such'.

I just don't think saying autism is enough, especially when there are so so many of us who are fully functioning, even if it's masked [/quote]
I think you are overthinking. You owe noone and apology or full explanation of his medical history. Just explain that he is autistic. People should be able to clearly see, based on your description, that his autism is different on the spectrum to others they may know with autism. That is enough.

@Phineyj

I found 2reefs questions very insightful. If you asked these about my DD (8, intellectually able but very affected by ADHD, okish in groups but not always able to decode subtle behaviours, hyperactive, hypermobile, demand avoidant, sensory seeking) you'd have a pretty good idea how to engage with her at school.

Outside school she appears neurotypical outside the house, but inside can be aggressive, violent even. She has gradually switched to using words as weapons more.

This is pretty much totally different to what OP is dealing with but same diagnosis (plus the ADHD).

The point about life insurance I completely get though. I would hope DD would be able to live independently as an adult but I'm hedging my bets on that. I had her at 40 too!

If it helps you I have 2 family members with ADHD and am awaiting a referral myself. We are all professionals. ADHD mixed with the hormones of growing up can manifest differently to how it does as an adult. Keep doing what you are doing, supporting her etc and allowing her opportunities and there is no reason she couldn't live independently

I agree it really doesn’t help people with low functioning autism to be lumped in with people with Aspergers and ADHD. Especially when you consider how limited spaces at Special Needs Schools are. I also don’t think birth injuries that present with Autism like symptoms should be included because unlike other types they often don’t respond to treatment.

My point is that an umbrella term of "autism" is great but so very non-specific. It tells others virtually nothing because the spectrum is so broad and diverse. Low/high functioning was a poorly thought out concept but that doesn't mean we shouldn't try to think of some other system that's more meaningful. An autistic person can be totally non-verbal but not have any intellectual disability. The Reason I jump by Naoki Higashida is a good book to provide some insights. this is interesting and I agree that the term is too vague. That book was great.

I get the point about Asperger’s meaning people get no support. But I wonder what has changed in reality anyway. Do more people get support now the term has gone?

And yes, Christine from the programme did seek a diagnosis after the questionnaire. I guess tv doesn’t show the true depth of that process. It made it look like a questionnaire and a quick chat with a man. I really felt for her having suffered so much as a child and struggled as an adult. She is an amazing mum, so patient and empathetic with her kids.

@VividGemini

Learning Disability in the UK is interchangeable with intellectual disability

There's a move toward changing the terminology towards ID, and in some areas that's the term that's used, while other areas still use LD. There was so much confusion over the difference between learning disabilities and learning difficulties (dyslexia etc).

I think that (speaking as the mother of a child with autism, someone with an assessment appointment booked myself for next month and as a SALT) they have tied themselves up in a right knot at the moment with the autistic spectrum as a diagnosis. I also think that, since it's stayed like that for the DSM-5 and the ICD-11, it's not likely to get sorted out for a good few years yet.

You have a very large group of Autistic advocates who demand that they are the only voice listened to in terms of autism research - but who are at a completely different level in terms of support needs and difficulties experienced to someone who is non verbal and will have total support needs for the whole of their life but who also shares the diagnosis - with no ability at all to self-advocate. I've seen some pretty vicious pile-ons to parents of very disabled children who advocate for their children - because the parents aren't Autistic themselves.

Yes, I get it - for people who function well with the diagnosis it's incredibly frustrating to see others make sweeping statements about Autistic people and try to force decisions about them upon them... I've sat with steam practically coming out of my ears before - but at the moment one end of the spectrum (if you take the view of ASD as a linear spectrum which many people take issue with) gets listened to and the other end who have to rely upon others to advocate for them get shut down completely.

And do not get me started on the difficulties in getting ASD understood in girls and women! DD2 (and me) tend toward sensory issues, massive anxiety about things like being on time and seen to follow rules and not be called out by random people for not doing the wrong thing - so we look wonderful in a school classroom or whatever as we're trying to just not stand out!

SwanShaped
Questionnaires are often used for initial screening in lots of conditions such as autism, anxiety,depression and also physical conditions.
They are useful as a starting point, but diagnosis would not be made without further history taking by a suitably qualified professional.

Thanks newmum, I suspect DH would have had the same diagnoses had there been more knowledge when he was little, (however, he's been very happy in academia and has strong special interests in inanimate objects like bikes and cars, which facilitate him taking to people. He really struggled in jobs where he had to manage other people). DD will find her niche too I hope. We had some NVR training with a really lovely young man who grew up with ADHD and his brother has ASD. I found it really encouraging to watch him in action.

The impulsitivity does worry me. I could relate to the poster above whose niece tells random people about her menstrual cycle, has little sense of stranger danger etc. If you are articulate, you can talk yourself into a lot of trouble!

My brother is austitic and I creditable clever. Yet incredible impact. Lives in Highley supported living as cannot manage tasks of daily living. Has a few fairly low level health needs coeliac but again is massively impacted in maneging this as he has extreme food phobias and is clinically underweight. He can read write etc and on paper should have a job live more independently. So I think it's hard to define. Sub groups. He was also silent and non verbal till 7 years. Yet has no language difficulties now other than those austiam give him. So at times he has moved the spectrum. When we were kids no knew what autism was so we used general terms like handicapped - I know not suitable now. So if you want to explain maybe a general special/additional needs. However mostly I'm of the view people can work it out for themselves or sod off!

@wiklowarrior I could have written your post.

I have two children with diagnosed ASD. My eldest is in top set at a mainstream school, is medicated for anxiety (since the age of 11) and basically has an almost limitless understanding of every mathematical/science concept he reads about.

He presents as totally normal, but does the talking endlessly about what he is learning and refuses to socialise.

My middle son is at a special school, diagnoses with ASD at 2.5.

I was in despair at my middle son's diagnosis because it limped him in with kids like his genius brother. I want him tested for IQ and diagnosed properly with low IQ but they seem to think autism is a catch all diagnosis. It's not.

I tell people ds is disabled. I never use autism the term anymore. I got fed up of people telling me they knew a boy with autism who is now working for a software company etc.

I totally agree with your post.

How old is your son?

@TowandaForever and in many ways removing the aspergers term hasn't lead to any more support at all, in fact it's made it harder as many LAs and areas have ended up having Autism+ policies which now blocks support for all autistic people unless they have an additional diagnosis or diagnosed learning disability.

Agree on the US levels approach. Three children with autism in my family. Three different types of life challenge, and none of them could simply be explained by ‘autism’ because they are all individuals, but two of them would be level 1 in the US terminology and the other level 2, and so just that difference alone can be captured so quickly.

I do find that I struggle to describe him and his needs as so many people now conflate autism with, say, Sheldon from TBBT, that a child that has more needs, and whose behaviour will appear challenging, doesn’t fit their mental picture at all. Ditto the fact that parenting him has a real impact on my wider life and career - people seem confused why a child who is ‘just autistic’ would need so much support and attention.

I must have filled in dozens of questionnaires. A couple I did find really helpful. I had thought DD might have low self-esteem due to the obvious gap in output in class between her and most of the other DC, but it turned out her self-esteem was pretty good but her anxiety was very high. And by doing another questionnaire I was able to understand some of her behaviours as sensory seeking. The parent questionnaires were a real light bulb moment for DH too.

@CoffeeWithCheese I agree fully with your post.

The voices of those who can't advocate for themselves have been completely rail roaded.

DH considers Sheldon some kind of role model. Sheldon is shown to be significantly impacted by his ASD, though, isn't he, even if it's played for laughs?

My 7 year old DD is undeniably autistic. 5 year old DS can appear much much more neurotypical

@Phineyj Sheldon has never been officially said to be autistic

Well, Sheldon has friends and a social life, a stable well-paid job, a wife, and wins a Nobel Prize. He also ‘improves’ I would say. So I’m not sure he really represents the harder side of autism.

But he also doesn’t represent a lot of people with autism at all. So the fact that he’s become the Rain Man of the 21st century isn’t hugely helpful.

And, indeed, the programme makes it repeatedly clear he hasn’t got any diagnosis.

My son was diagnosed with 'classic' autism and GDD (now reclassified as a learning disability) when he was 2. I don't particularly care for high and low functioning labels. High functioning denies support and low functioning denies agency.
I see so many parents say their child has no understanding and no awareness and the fact is that you have no idea what they understand and what they're aware of because they don't react and act how you think they should. My son understands a hell of a lot more than he's given credit for.
If I really must specify, I'll say he has a high level of complex needs. I certainly wouldn't be specifying anything to Joe Bloggs on the street, they aren't owed an explanation.

Aspergers needs to be packed away in the past. Hans Asperger was a nazi who murdered many autistic children who weren't deemed useful enough to live. My son would have been one of them. Not a name any autistic person should have associated with them.