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.

@DanceMonkey19 perhaps it varies by area, or on whether it's child or adult services — I was given a DSM diagnosis with a specified support level by my local NHS adult diagnostic service, as well as an ICD-10 diagnosis of Childhood Autism, a mention that I could also have fitted Asperger's, and a Read code. I think they like to give options

I'm not going to argue in favour of or against that particular system of subcategorising autism, because any categorisation system is going to have its problems or be inadequate for certain purposes, and often there can be several ways of subdividing people within a group depending on what's relevant. The point I'm trying to make is just that it's entirely normal for a diagnosis to cover a range of people with different difficulties and needs. Often subdivisions are needed for practical purposes, but all those very different experiences can coexist under the same diagnostic label — that's not unique to autism, or necessarily a sign that the diagnosis needs splitting off.

@treasurefoil you could nitpick about whether all of the specific disorders I mentioned are directly analagous to ASD in every possible way, or you could engage with my point — that it is entirely normal for diagnoses to be shared between people whose experience with their condition has a very different impact on their life, and they have the same diagnosis because doctors and scientists have determined that based on current knowledge, categorising this way makes sense.

I took Lolly's post as meaning that depending on the presentation of asd, along with the presence or absence of common comorbidities or learning disability, will affect the opportunities available. I suspect when she said 'seemingly normal' she meant that autistic people without these comorbidities have opportunities open to them that her DC did not? That is not to say that life was easy for you (and indeed I'm sorry to read of your struggles).

Your son will experience many conditions/ disorders/ diseases differently because of his learning disability.

We don't categorise other illnesses like asthma, epilepsy, cancer etc based on intellectual/ cognitive ability so why should we do this for autism?

What I often see ignored in these discussions is the idea that a) suffering is a part of life and b) as autism is a spectrum, it's also true that not everyone with autism is actually struggling on a daily basis.

My DH has autism. He has a great career which he loves. There are a lot of people in his industry as a whole and in his workplace specifically who have similar traits to him (no idea if people are diagnosed - that's not the point - it's that he's in a "birds of a feather flock together situation where they gel and in other social situations would likely experience difficulties - my DH does). He's made a life for himself, before he had any idea of the diagnosis, which feels comfortable to him. About twice a year when he has to do large, company-wide events for a week each, he finds it really hard (lots of small talk is involved) and is visibly stressed when he gets him. Has a meltdown etc. The other 50 weeks of the year he's happy as Larry. Genuinely.

He wasn't bullied at school.

He studied in a male-dominated area which really suited his strengths.

His family has a strong similar history, so everyone just deals with the "oddities" of some family members as quirks.

His DF worked in banking and had a similar life experience until banking went highly computerised around his retirement and the change was too big for him.

So suffering is not necessarily an innate part of the autism experience. At least no more than others experience. NB I'm not saying nobody with autism suffers! But the level of suffering I think may also be part of the spectrum and not a measure of the condition.

I absolutely agree there's a world of difference between someone like my DH and someone who has other aspects of the spectrum that result in them not ever being able to live independently. I find it odd that there's no way to indicate a difference without someone being offended, because it's a material reality, not a value judgement.

Of course I agree doctors know best and all ASD have a diagnosis

At this point I'm not quite sure what you're arguing, @treasurefoil.

@relamped it's an interesting question. I think possibly because difficulties associated with asd are around social communication and how one views the world? Which is not the case for the other conditions you mentioned. Also, for those diagnosed as young children, the asd diagnosis often comes first, with intellectual disability being added later.

There clearly isn't an easy answer or presumably a solution would have been found by now!

I think sub-deviding into profiles could help, but feel it should be based on areas of relative strength/ weakness, not nessercerily 'severity' or linear scaled.

DS has autism, he needs a lot of support in school, but can succeed if that suport is in place, so in someway is 'lucky' compared with others. I find when I tell people he's autistic I always end up tagging on quiet a lot of information to describe how he is affected, which is often more then I'd like to share just to convey something like "DS won't manage you kids party, but still values the friendship and would love a playdate some time".

the diagnosis/description should be changed for high functioning people, as opposed to those who have serious disabilities

This already exists. There are three levels of ASD.

Level 1 - Requiring Support
This was formerly Asperger's. It covers people who have minor difficulties with things like relating to people or being understood.

Level 2 - Requiring Substantial Support
This covers people who have more obvious difficulties, more apparent stims, more challenging behaviours due to sensory issues and who struggle to cope with changes in routine.

Level 3 - Requiring Very Substantial Support
This covers people who are non-verbal and have extreme behaviour difficulties. This is the severest level.

So what more do you want? A special name for people who have the severest difficulties? For level 1 people to not be allowed to be called autistic?

What kind of vested interest?

It’s highly unlikely my ‘high functioning’ kids will live independently either. Neither can manage without a great deal of support to function. I live independently but my finances, social life, family life, relationships and mental health are all a disaster because I’m autistic and cannot cope properly.

I do think there needs to be more than those three levels, yes.

I am unofficially DX - by that I mean several Drs agree I am on the spectrum but none are specialists who can DX officially. Having seen my DP go through the process of getting that DX made official, and given that I am self employed, already in receipt of disability benefits for my physical disabilities, and I have created a functional world in which I work, collaborate and interact with others who understand me... there is no benefit to an official DX except perhaps to show folk who don't believe me. And they're really not important.

DP - officially DX by a specialist in adult autism.

It covers SUCH a huge spectrum, which is an issue.

More so however, I firmly believe there are children out there being effectively written off, because 'severe autism' and actually they have other conditions, as well as the autism that are going undx, untreated, and not living to their fullest potential as a result.

If we broke down the huge number of conditions that get lumped into 'autism', and routinely looked a bit further (and updated the various methods and standard practices and techniques used with level 2 and 3 autistic kids, many of which are fucking barbaric!)... they'd stand a much better chance of a better, happier and easier life.

@relamped - but autism isn’t an illness in the same way that cancer is. It’s a condition:

I sympathise a lot with @Goinggoinggone1 . I have a relative who falls into the grey space between not really qualifying for extra support yet also not quite able to lead a ‘normal’ (for want of a better word) life. It’s a pretty miserable place to be.

Hi, It is already recognised thst there needs to be a change in the autism dx to reflect those who have more severe needs. It isn't to the dx for people who would be high functioning or what was aspergers though. Profound autism is being used to describe and separate out those with severe needs. It was the Lancet that have formally started to push for the use of profound autism.

www.google.com/amp/s/www.psychologytoday.com/gb/blog/inspectrum/202112/lancet-commission-calls-new-category-profound-autism%3famp

Being able to describe whether clinical or less formally is vital and its awful that those who support those with the most needs are being silenced in the name of inclusively or out of fear of insulting someone who is less impacted.

I always think that with autism you have a group of people who have very limited communication and therefore are unable to advocate for themselves. The people who do advocate fir them are then told not to as they are not autistic themselves. People who have autism but are not profound cannot speak for those who are as they'll have no idea what is like and likely due to their own dx (autism being a social communication disability) will have difficulty seeing from the other side.

Saying someone with profound autism is happy and therefore has it easier than others is ludicrous. How do you possibly know that to be true?

Also, what usually happens with these threads is that the anxiety suffered by those who are more able is put across as bring more debilitating than the needsvof those who have profound autism.

What usually happens with these threads is nobody listens to anybody else because nobody is open to seeing a different perspective and so it just becomes two groups talking at each other with one group thinking they're fighting for autism and the other feeling like people are fighting against them. Same shit, different day.

Yet only one group gets told they lack empathy and open minds.

Autism is too complex to try to narrow things without meaning people get let behind and stereotypes become even stronger.

we need more individualised support based on what that person needs rather than smaller boxes which people are expected to fit into.

function labels say a lot more about how other people see their autism rather than the actual person.

I disagree. There are many high functioning autistic adults having independent lives, with specific areas of support. It's not been long since the medical profession have learned thru research how broad the spectrum is.

My neighbour's son, high functioning, have got his Ps (driver's license ) and is in uni doing a psychologist degree. A diverse functional ability is a much better way to define broad spectrums instead of relying on a basic diagnosis.

I think the trouble is there’s only one, very limited, financial pot for autism support. Little Freddie only eating beige food and talking obsessively about trains might be boring and have its challenges but it’s not the same as dealing with a violent, non-verbal, doubly incontinent child having multiple daily meltdowns. If you are the parents of a Freddie, of course you deserve support. But when there isn’t enough for children at the severe end of the spectrum it’s easy to see how this can create resentment. There needs to be a wholesale review of support packages based on the current levels of diagnoses, but that’s not going to happen anytime soon, sadly.

The autism community doesn't help itself. We have local autism groups but my child can't attend as his needs are to severe and they don't cater for that. We have groups specifically for Asperger's. It's all well and good having an autistic spectrum but my child gets segregated, were exactly do we fit in. We need to make our minds up we are either one in the same or we aren't.

I wholeheartedly agree.

this week there is a story in the news about promising results in mice for a drug to cure the symptoms of autism.

for a family like yours op, I imagine that is welcome news.

in our household it sparked a discussion that even the suggestion of a cure for people like us is unbelievably offensive. The benefits of ASD far outweigh the struggles for myself and my dd. We were horrified at the idea that in the future children might have their potential stolen with a drug treatment simply because their parents are afraid of autism and not because of a true need.

The realities of the radically different experiences along the spectrum is that different groups have radically different needs. Everyone would be better served if we returned to a formal recognition of that fact.

"Saying someone with profound autism is happy and therefore has it easier than others is ludicrous. How do you possibly know that to be true?"

People who make those sort of statements irritate me. It is a complete lack of understanding of what can cause people to be anxious and not trying to see life from that persons position.

This isn’t particularly controversial within the research field. My adult son is non-verbal. He was diagnosed at 2. His geneticist thinks his condition is due to a de novo mutation (ie one not carried by us, but that has arisen in him). This is fairly typical for those who present like him - autistic bit who require significant care (he needs 24 hour 2:1 support).

It is very different to the autism that seems to run in families. Most research into autism has been with those less impacted - largely due practical reasons - it’s bloody difficult to do research with those who are non-verbal and has learning disabilities. It means they are very much overlooked through in terms of the autism narrative

A number of years ago some people started to talk about the autisms rather than autism - to recognise that it is umbrella term with many different causes. That doesn’t always go down well, but I like it

i don’t think support money is really linked to diagnosis. My son’s packAge is expensive, but that’s because not providing what he needed before led to an extremely expensive situation for the NHS & now they pay to prevent that. Also because it went so wrong before he can access different funding - but not related to having an autism diagnosis.

Being able to access CHC funding is another means that can make a difference to money available - but that is very much related to impact on functioning, rather than diagnosis. Some autistic people get that but it would be due to severe epilepsy (for example), or the severity of their behaviour, rather than the diagnosis. Once your needs become more than social care then you can probably access at least some health funding to fund your support package. That isn’t related to the diagnostic label though - it is related to need. For example, locally anyone requiring 2:1 support will usually get at least some of their package funded by health because social care here will not fund 2:1.

@ProbablyRomanticised I agree with you entirely
my son is 16 and has asd, others looking in often say he is mildly affected but for my son it impacts every aspect of his life, the high anxiety, the social and communication difficult ( even though he can speak eloquently) the sensory issues etc……
as you said it’s how other people perceive that individual, I some respects a lot more is expected of them becuase their difficulties are hidden away. My son is a master at masking.

This is my personal experience of having high functioning autism.

School and casual retail/hospitality jobs were an exhausting nightmare for me. I couldn't cope with the amount of people I had to interact with every day. All that effort to become friendly with them for the customer to leave 10 minutes later or a nice work colleague leave after a few months!

Now I work in science with small teams and cope with the limited small talk that is expected of me. When the inevitable conferences happen I prepare by taking it easy on myself, planning no other social engagements that week, and chilling at home after with very easy quiet activities.

My problems are mostly social anxiety and I got so good at masking I thought that was how everyone learned how to behave when learning social cues.

My struggles are nowhere near that of someone who is non verbal and can't live independently, so yes I agree with OP that an autism diagnosis is far too broad. At least categorise it into 3 or 4 groups based on behaviours/symptoms.