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.

Nope not really as impact can be catastrophic in other ways even leading to death.

The description will surely hinge on the report and professionals who gave it. Even non verbal autistic people will vary and a one size fits all label within that category.

My DD’s diagnosis hasn’t been meaningless at all. It’s been hugely beneficial as her treatment abd handling is tailored towards it.

I totally agree @wiklowarrior

I have autism & ADHD and every single professional I’ve dealt with regarding both have been totally against “labels”

I don't really agree with the notion that you can separate a person into all their separate diagnoses as @Justrealised, for example, has suggested. So far my DC has asd, adhd, dyspraxia, dyslexia, hypermobility, ocd, generalised anxiety. The camhs psychiatrist told us the collection of labels is basically meaningless, they're all more than likely just describing different aspects of a single condition (probably genetic) that affects my child. Where do you draw the lines between the different labels? They overlap and layer upon each other. Putting the traits of a person into neat little boxes isn't possible or even desirable in my opinion.

Labels are found on suitcases and jars of jam.

Medical diagnoses, sometimes given after several appointments in different settings, often by a team of highly qualified professionals, do not deserve such a derogatory term.

It minimises and trivialises conditions which are debilitating, disabling and lifelong.

@BlankTimes - perfectly said.

Believe me, I do not trivialise any of the conditions I mentioned, BlankTimes. If you prefer to
say comorbid diagnoses that's fine too. I think we pay too much attention to the names/labelling of conditions, and create division somewhat arbitrarily. Each new revision of the DSM brings change.

My point was that so many people have these mutiple diagnoses - one study in 2010 found 95% of people with ASD have 3 comorbidities, and 75% have at least 5. The same types of comorbidities too. Yet pp have said, for example, that MH issues, or intellectual disability are entirely separate to autism. I disagree. If these conditions are occurring at such high frequencies in the autistic population, then I don't think they can be considered entirely separarely. They're linked, though not in everyone of course. It can be hard to say where one diagnosis ends and the other begins - my DC's MH problems stem directly from the 'black and white' restricted thinking typical of ASD, and cannot be treated without acknowledging this.

I don't think having an alphabet soup of diagnoses is helpful either. My DS was truly upset by the number of conditions he was diagnosed with, he found it dehumanising to have so many issues, and it greatly affected his self esteem. His psychiatrists helped a lot when they explained they were just tools used to describe various facets of his condition. It's of note that two (highly qualified) psychiatrists, working completely independently of each other, told him this. Both were adamant that 'it didn't really matter what you called them' (them being the diagnoses), that he didn't really have so many conditions, that they were just different ways of describing aspects of him. It's addressing the problems a person faces that's important, not separating those problems into boxes. A unified approach, in other words.

Bessie my DD’s psych seems to be going with that too. More of a focus on the traits than the label. If she was written of as mild autism I’m not sure the severity of some of her traits would be dealt with as seriously

I think if anybody is unable to communicate how they’re feeling to the extent they self harm, restrict food or become suicidal and continuously mask during treatment it’s not a mild condition.

Ds has a list of Comorbids as long as your arm. There is no way you could ever begin to try to separate things out because they all overlap and influence each other too much.

Just the same as his physical health issues where things often go hand in hand and one impacts the other. The lines get blurred between them

Ok, so this is general reply and not aimed at one person, as to why i think people with "severe", "low functioning", "classic", Kanner's....autism should be given. Please note I have said I don't agree with the term mild being used where a formal dx has been given.

So 3 people, not based on anyone in particular:-

Person 1: autism dx (aspergers given as a child) married, has children, has a career, has a mortgage.

Person 2: autism dx, verbal and articulate in surroundings that don't cause anxiety, severe anxiety leading to suicidal thoughts, able to engage with psychologists and understand their explanations and help, academic and able to learn (possibly really bright in some areas), didnt get GCSE's as couldn't cope with school, no career as can't cope in the workplace, able to have conversations, lives with parents who help manage mental health aspects. Enjoys xbox gaming. No friends due to social anxiety but has acquaintance and online friends, able to engage in chat rooms and forums/ online gaming.

Person 3, autism dx. Non verbal however verbalises with grunts, whizzing, humming, other noises, few personal hygiene/ self care skills, rocks and stims alot, no qualifications but went to special school until 19, learning age in most areas of year 1, requires at least 2:1 care at all times, has no understanding of safety, lives in shared facility with good PA's via budget (have to dream), enjoys being around animals and mickey mouse.

How can the one dx adequately describe all three people?

But how do you separate? It doesn’t work and trying to separate just creates more issues.

Autism is the overall umbrella term. It doesn’t fit simply into 3 (or more) categories like your trying, the vast majority of people with autism will have such spiky profiles they simply won’t fit into a neat smaller box like your trying.

To try to restrict the criteria into tighter categories will lead to too many falling through the net because they don’t fit into a box

And how can you put people into boxes?My dd doesn’t fit into any of your categories. Has traits from 2 and 3, one would hope 1 too eventuallyCrucially struggles to understand her own feelings and emotions so struggles to understand, communicate and engage with psychs and psychologists.

And squashing women and girls who mask into a type 1 kind of box, dismissing their struggles is why we have seen an epidemic of mental health struggles which often explode in the teen years when they can’t contain themselves in that box anymore.

That’s a very good point barn0w1, we all know that too many girls and women slip through the net as it is because the diagnosis models are too often focused on the typical male presentation of autism we don’t want to do anything that could make that even harder.

I'm not advocating for 3 categories my example was to show the difference in how people present, I could give more and more examples.

I'm advocating for a separate dx for those with what was described previously as classic autism/ severe etc to have a separate dx as the way they present and their needs are clearly vastly different.

Why are you so against this group of people having a separate dx? What do you fear it'll remove or change fod your loved ones?

@Sirzy

That’s a very good point barn0w1, we all know that too many girls and women slip through the net as it is because the diagnosis models are too often focused on the typical male presentation of autism we don’t want to do anything that could make that even harder.

The person in my 3rd example isn't able to slip through the net, they can't mask or struggle to get by due to their needs. This is my point a person who can mask still has needs but their needs are a million miles away from someone with severe autism who would never get missed in dx terms.

Nobody should slip through the net though. You seem to be suggesting that those who are in your category 3 are more worthy or something.

Small boxes don’t work.

@Sirzy

Nobody should slip through the net though. You seem to be suggesting that those who are in your category 3 are more worthy or something.

Small boxes don’t work.

I'm not saying that at all. I'm saying that they have vastly different needs and presentation and that the umbrella diagnosis due to the vast array of presentations it covers doesn't adequately describe them and isn't helpful to them or their carers/ support. How does separting that group remove anything from anyone else in that umbrella. I haven't said what I think should happen to the remaining, infact I've said I stand by the NCAA stance that it isn't my concern.

NCSA stance rather

So under the term autism your child gets their needs met and so does mine. Each will be assessed . There is a big push on keeping autistic people out of inpatient now which my dd is at risk from and I suspect yours is too.

A range of autistic people finally getting their needs recognised and understood is progress. It doesn’t take away anything from your child. I suspect your child wouldn’t need half of what my child gets and vice versa.

You seem to think my child getting the diagnosis she needs and deserves is taking something from yours.

@Justrealised - i want everyone to get the support they need and if the most vulnerable need that new diagnosis then i support it as its not all about me.

But put simply, the thing I fear is that my child is only able to access particular services because as much as things are supposed to be needs lead, much of what we needed only became available on disgnosis. Will these services become reserved for severe autism only in a post brexit, post covid, austerity britain? Services like cut-offs as a form of rationing but people dont fit cut-offs so neatly. I also think the people who assess PIP are cruel and if if you put all people who can talk in one category away from the severe category then it runs the risk that only the severe diagnosis will be considered for benefits or sheltered housing etc.

So thats my fear and I think its a rational response to my experience of services so far. That my son whose repetitive behaviours are extensive and dangerous will find he is in the university lecturer category due to his speech and toileting skills, and the expectation for this group will be much higher because all the people with severe autism have been seperated out.

i want enough services for everyone that needs them basically and you do to but we feel a bit different about how to achieve that.

And those most likely to not get the support they need are those who would fall just out of the tick boxes for “severe” but who are still severely impacted.

@Justrealised

Ok, so this is general reply and not aimed at one person, as to why i think people with "severe", "low functioning", "classic", Kanner's....autism should be given. Please note I have said I don't agree with the term mild being used where a formal dx has been given.

So 3 people, not based on anyone in particular:-

Person 1: autism dx (aspergers given as a child) married, has children, has a career, has a mortgage.

Person 2: autism dx, verbal and articulate in surroundings that don't cause anxiety, severe anxiety leading to suicidal thoughts, able to engage with psychologists and understand their explanations and help, academic and able to learn (possibly really bright in some areas), didnt get GCSE's as couldn't cope with school, no career as can't cope in the workplace, able to have conversations, lives with parents who help manage mental health aspects. Enjoys xbox gaming. No friends due to social anxiety but has acquaintance and online friends, able to engage in chat rooms and forums/ online gaming.

Person 3, autism dx. Non verbal however verbalises with grunts, whizzing, humming, other noises, few personal hygiene/ self care skills, rocks and stims alot, no qualifications but went to special school until 19, learning age in most areas of year 1, requires at least 2:1 care at all times, has no understanding of safety, lives in shared facility with good PA's via budget (have to dream), enjoys being around animals and mickey mouse.

How can the one dx adequately describe all three people?

I have been all of those 3 people throughout my life. Which box do I go in?

@Barn0w1

So under the term autism your child gets their needs met and so does mine. Each will be assessed . There is a big push on keeping autistic people out of inpatient now which my dd is at risk from and I suspect yours is too.

A range of autistic people finally getting their needs recognised and understood is progress. It doesn’t take away anything from your child. I suspect your child wouldn’t need half of what my child gets and vice versa.

You seem to think my child getting the diagnosis she needs and deserves is taking something from yours.

Why do you need who was previously described as severe to be in that umbrella for your childs needs to be met? Do you believe that having a separate dx for those who are severely impacted by autism and not mh would reduce your childs support? What difference does their separate dx make? I'm not saying your child shouldn't have a dx, I'm saying their should be a separate dx for severe autism. It could be called red autism or puppy autism or chip autism or Fred but a name that conveys the presentation of this group and their needs.

Why do you feel this removes something from your child?

I think everyone should have their needs met. I think part of that is being able to give a dx or describe briefly what someones condition is and have people understand roughly what that is. This used to happen with autism as people (mistakenly) thought of rainman. Now if you say x person has autism, it could mean anything. That isn't helpful to support workers, teachers, ta's, service providers or Joe Bloggs in street infront of you in a queue. I think this understanding has been removed now and it isn't helpful to anyone.

@Justrealised that sounds a bit like 'what happens to autistic people who aren't non-verbal is none of my concern'. The way it was previously was detrimental for me and my family. You are saying that now your (child's) needs aren't being met, which is obviously an issue, but your solution is for us to go back to a situation where my family's needs aren't acknowledged, and you don't care about that being the case. How is that progress?

In that case, how about removing the word autism from the severe group and giving them a completely new name? If the majority of autistic people are not 'severe', wouldn't that be easier than taking away autism from the majority and adding seven or so boxes to suit a minority? Why is that never offered as an option?

But by having an umbrella term it means those who work with the person need to get to know that individual which is much better than making assumptions based on which box they have been squished into.