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.

We can all make up bullshit to prove our point but unless you can back it up it’s just that- bullshit.

In that case, I doubt it's as easy to fudge an assessment as you think, as there is much, much more to it than that.
You can't really assert how easy it is to obtain a diagnosis if you're not even sure the assessment you're referencing was the norm.

OK, I'm going to bite. Numerous times on this thread there have been references to nt parents and their views not being the same as some of the adults on this thread with autism.

Autism is a social communication disability. So some posters may have difficulty with theory of mind etc and do are unable to comprehend others situation or realise that others will have more difficulty.

As a parent of a severely impacted child who would be classed as profound and should have had a dx at 18 months but it was delayed due to local policy until 2years, I can absolutely say that someone diagnosed in later life of someone who self diagnoses/ identifies as autistic is nowhere near as disabled. This isn't to say they don't have needs infact I think that those arguing to be in the same classification as my child and dome who are even more impacted clearly do have needs of some form or another.

You cannot self diagnose a disability. Autism is a disability which usually takes a team of professionals in different specialms to diagnose.

I do think that you can "fudge" a diagnosis, I'm pretty sure I would know what to say and how to present if I wanted....I definitely do not to be clear.

Professionals are calling for clearer language around Autism and less censorship. The Lancet even commissioned a paper on it last year leading to the term "profound autism".

Parents of those severely impacted are often shut down by #AA etc. We have to advocate for our children. The mainstream autism community doesn't as our children don't fit in their mould and they can't do it for themselves. A person diagnosed in later life, married with a mortgage, kids, career, drives etc even if masking or suffering from anxiety has a completely different life and presentation. It is a completely different situation.

Money and funding is an issue. Our children are the easy proof of why the dx needs funding and support bit its also like they're the dirty little secret of autism. With self advocates very quick to role out the learning disability as a comorbid condition but in truth many of these people never have that diagnosed as there is no separating how much is autism and how much is ld. Others don't have ld and are actually bright in some ways but their autism impacts on them so much they cannot understand basic social constructs like toileting, self care, talking, communication about more than basic wants and needs. Anxiety is never offered up as a Co morbid condition or the main issue many "high functioning" (don't shoot me, I couldn't think of another word).

So I bit, you can now be as insulted and astounded as you like without giving thought to what I've posted because of the belief that you have it worse. My beliefs and experiences are not less than yours and in terms of people like my son my experience of profound autism is more appropriate than yours. You may have it bad and I'm not doubting there is impact on you and your life but c'mon you're arguing on social media, you're on social media, you understand how to argue and are able to construct arguments, you actually care about this.

As for the visual of the autism dial, the people we are talking about don't really fluctuate, they are in the most impacted, the worst section of each area, every day.

Oh and to add yes disabilities, conditions and diagnoses are often discussed in terms of severity. It is a clinical term. Not using appropriate descriptors can harm treatment and understanding.

Presumably that’s the same for everyone. You talk from your experience I talk from mine. Or are you suggesting I just shut up because it isn’t in line with what you think? My experience is just as valid as anyone elses and my opinions drawn from those experiences have just as much right to be heard as anyone elses.

Fucking hell. How has this thread been allowed to stand?

The idea of fudging the assessment and getting a false diagnosis is utterly ridiculous. If I was that person I’d be doing a swift name change due to making a total arse of myself.

Anyway, just to say my child’s assessment took a lot of appointments, some with us, some just her, ADOS assessment, SALT assessment, multiple professionals involvement, very, very detailed questioning, as well as questionnaires. The idea that you could ‘fudge it’.......😂😂😂

I agree with you OP.

For e.g How is an adult who has managed to live an independent life, had children and manages to look after them and works full time, then gets given the same diagnosis as someone who
has never had a chance at leading an independent life, and is riddled with all kinds of comorbidities.

As adults, ‘high functioning’ adults’ voices then drown out the voices of the advocates for those more severely affected, even though they don’s really represent them.

I hope they find a way of splitting the groups soon.

I know it’s more complicated than high functioning vs low functioning because it’s a spectrum and many might have spiky profiles but ‘lumping everyone’ into the same category isn’t the answer.

@Cuckoosheep thats a brilliantly put post. I agree and much of it describes what I’ve been trying to express.

No, as another poster said, making that statement based on what you now say is personal experience of one assessment, is ridiculous.
It was a silly statement based on nothing credible, as we now know. And yes, it does undermine a lot of people's experiences. You can say it, I've never even implied you can't, but in saying such things it should be expected that people will respond, and not agree with you.

Yep, but it seems to be the hill they're determined to die on. 😂

I’m not sure why you think I’d die because you disagree with my opinion of the robustness of the diagnostic process?

I think this is a really interesting thread. I'm not offended by people who don't have the same experience or opinion as me - if this was important to a campaign or change in process I might be! I do think it's unfortunate there is such a divide between #AA and parents - I think that's a SM thing and not a real life thing tbh. None of my interactions have ever been anything other than empathetic even if we don't truly understand each other.

English isn't my first language, but I'm pretty sure that's a saying, a hill one is willing to die on...

Hill to die on is just a phrase I thought? I don't think anyone meant you were actually going to die?

I took the hill to die on sentence as meaning MNHQ were not prepared to move on letting these threads stand, rather than it being a reference to a particular poster?

It's illuminating though as it shows some of the difficulty in communication that can affect the discourse here.

In my experience, the parents most strongly criticised in this way are very often autistic themselves. Failures to recognise struggles can be because those struggles are what they perceive as normal, as they were the same for them.

I know many, many autistic parents and this is manifestly not the case. Not a single one of them is like that. Having lived it all their lives they are painfully aware of how hard it is and do everything possible to support their children. Also generally pick up indicators earlier so ensure their children get earlier diagnosis than NT parents do. And have far more understanding of their children's struggles because the listen to them, having spent much of their own lives having their experiences invalidated and ignored by others, just like on this thread.

Sorry I found Cuckoos post quite offensive and also lacking in a point.

“Autism is a social communication disability. So some posters may have difficulty with theory of mind etc and do are unable to comprehend others situation or realise that others will have more difficulty.”

Difficulty in what? Every diagnosis has a variety of traits which vary in severity. My daughter’s mental health has meant she has spent much of the last few years in hospital with her life at risk. I don’t really care what you think about her level of difficulty. We know what it is and live with it.

Exactly how would you fudge a diagnosis?

You are only shut down when disablist bollocks belittling autism diagnosis across the spectrum is posted. My child also can’t advocate for herself and I too will do that for her .

Money is not an issue as services required for different traits and needs come out of different pots. So worry not my child does not want your child’s money and her diagnosis doesn’t in anyway impact money you want for your child. She probably doesn’t use any of the services your child requires and equally you will have no need for those my child requires.

Nobody has said they have things worse only that different traits have different levels of severity in different people.

My daughter doesn’t fluctuate, she is impacted every day.

My daughter’s autism diagnosis does not harm your child’s treatment and understanding in anyway at all. Every person with autism is treated as an individual and areas of need are dealt with according to need.

You just don’t like others having the same diagnosis as your child but you don’t get to choose. Highly skilled teams have the job of deciding who does and does not get a diagnosis and that is unlikely to change anytime soon.

It’s always quite noticeable that those significantly/profoundly impaired by their autisms attitude to the changing of the criteria to include those able to pass more easily as neurotypical isn’t nearly as positive as those more able. I think to suggest they’re mistaken rather than listening to their truth is a huge part of the problem. I personally was really pro dsmV change to include Aspergers under the ASD umbrella. I thought it was going to be hugely helpful to have autistics who could express themselves well, who would talk honestly and passionately about what helps and what doesn’t. I thought they would be a wave of fresh thinking and advocate brilliantly for ALL autistics. What I’ve seen is the autistic step aside or pushed aside or talked over, and while provision for and assessment for one group has grown it has dwindled to almost nothing to others.

those of us living successfully in the NT world should not be speaking for people who are profoundly impacted by autism. We simply aren’t positioned to be good advocates. I don’t want my autism muted. I just want a bit of understanding that it’s ok to be me, even if people sometimes find me a bit odd.

My advocacy for my child is helping her navigate a world built for NT people. I’m making sure she doesn’t get overwhelmed by anxiety when thinking about what top universities to apply for. I’m making sure her sensory issues with food don’t become a full blown eating disorder. Im teaching her how to create lists and guides for herself to help with new situations and making sure she gets practice and guidance on expected social skills. I’m making sure she doesn’t have to struggle alone like I did, but I’m not remotely worried that she is going to be able to live a happy, successful life.

people who can be their own advocates have to be the ones to speak. Those that can’t, it has to be the families.

@Ca1mingC1arySag3

"My daughter’s mental health has meant she has spent much of the last few years in hospital with her life at risk". I feel for you and your daughter, ofcourse I do but mental health difficulties are separate to autism. You can have autism without mental health needs and mental health needs without autism.

"Money is not an issue as services required for different traits and needs come out of different pots." This is incredibly nieve. Your child's funding is likely via the nhs at present if she's an inpatient. When she is well enough to leave it is likely (I can't possibly comment with 100% certainty) that she will recieve a mix of nhs (hopefully) and social care funding. These pots are influenced by need in the area and are never enough for any section of society, likewise nhs funding. Some funds are ringfenced for autism specific dx. Do you really believe that these funds would be there of the full presentation was that of somebody late dx with children, married, career etc? One of the reasons that aspergers and high functioning was put under autism was because there was campaigning thT these terms give the view that there isn't any needs and therefore access to services and support was limited.

"My daughter’s autism diagnosis does not harm your child’s treatment and understanding in anyway at all. Every person with autism is treated as an individual and areas of need are dealt with according to need." Actually it does change perceptions. My son presents completely differently to your dd and to all the diagnosed posters on this thread. His autism isn't mainstream and people who have no personal insight into autism generally understand autism to be like the good doctor or Sheldon etc because that is what they know or the naughty or quirky kid at school. Having and using the correct terms to describe people's condition is incredibly helpful and the opposite equally as unhelpful. My ds can't access autism specific groups because he is too autistic.

"Nobody has said they have things worse only that different traits have different levels of severity in different people." The whole thread is about whether a different dx is required. Some posters with less severe autism defending the position of keeping the grouped dx. Also some people don't vary in severity much, they are at the severe end of all traits all the time. They are profoundly impacted.

"You just don’t like others having the same diagnosis as your child but you don’t get to choose. Highly skilled teams have the job of deciding who does and does not get a diagnosis and that is unlikely to change anytime soon." The term "profound autism" is now being favoured to distinguish. It was formaly introduced by the Lancet last year. I don't mind others having the same dx, I just want them to have similar presentation, needs and required support to my ds. You can't justify your thoughts by claiming to know what I think, you're wrong on this. I can say that with certainty as they are my thoughts. Throwing it back at you, why would you want your child to have the same dx as mine when they clearly present in different ways by your implication? Surely it would be easier to have others have a better understanding of her and her needs more easily?

I don't care that you're insulted. These are my opinions, you can't censor everyone that doesn't agree with you. This is part of the problem in the autism community. Having a different opinion to you doesn't make me ableist and throwing that accusation around to get me to not engage is childish, likened to name calling in the playground.

Yes I do think people can get a dx of they know what to say especially as an adult. I wouldn't personally as I don't want, need or warrant the dx.

This is a decent article on why language censorship in regards to autism isn't helpful.

www.psychologytoday.com/us/blog/inspectrum/202301/fighting-censorship-in-autism-discourse

@Cuckoosheep

it’s not having a different opinion that makes you ableist.

it is you bigoted, ignorant and dismissive attitude that does.

I have no doubt that parents of profoundly autistic children as well as the children themselves of course have incredibly difficult lives. I have no experience of this and would never ever dream of dismissing any person’s experience in this regard.

yet you, a non-autistic person, have the arrogance to suggest that you could easily get a diagnosis, dismiss the often horrendous struggles that those of us not categorised as profoundly autistic can experience and then say you “don’t care”

this reveals your views of ”high functioning” autism as deeply flawed and makes your views categorically ableist.

I have become pretty much inured to words such as ‘bigot!’ spat by the intolerant, or accusations of ableism to try an silence people they disagree with. I think this is an interesting article that I don’t entirely agree with but show some of the risks around at the moment. Even Scautish will probably agree with at least some of it; www.spectrumnews.org/features/deep-dive/autism-research-at-the-crossroads/

The discussion is should there be different words/diagnosis for different presentations of autism, (a return to Aspergers and autism perhaps), or are we better served by one group diagnosis. I feel it’s probably best to remember that the autism diagnosis was already separated into high and low functioning (above and below IQ of 70).

@Scautish from reading your post you think I'm ableist because I think that I know enough about autism and it's presentation to get a dx if I wanted? Which I don't. Is that correct?

You refer to people having a hard time getting a dx. The implication of this is that they are actively seeking a dx. A dx that is pursued until it is gained isn't helpful to the person and is similar to what I'm saying I could do. I do know of people that have been assessed, not been given the dx so moved to another assessment base and so on until they recieved the dx.

You cannot label someone as ableist to avoid discussion because your views aren't being validated. You may have had a hardtime getting a dx but that doesn't mean I couldn't if I like many others sought one.

You refer to me with viterol "you, a non-autistic person". Are you implying that because I don't have a dx my views aren't valid?

My don't care comment was aimed at anyone who takes offence at me citing my opinion. This is due to thr number of posters calling for the thread to be taken down because of opinions like mine, saying that others opinions are insulting.

I haven't dismissed anyones struggles, I have wrote that there are people who are more impacted by their autism, which is factual. I have also wrote that there are people with profound autism, this is sldo true.

The below is a quote from the following article, it seems to articulate some of what I am trying to convey.

www.psychologytoday.com/gb/blog/inspectrum/202102/weaponizing-ableism-in-the-world-autism

"Ironically, by censoring parents trying to speak about the lives of their severely autistic children, self-advocates are actually the ones guilty of ableism. Nario-Redmond notes that “the term ableism clarifies the notion that anyone can be impacted by ability discrimination” – which is exactly what happens when autistic adults privilege the voices of those with the capacity to speak for themselves and reject the legitimacy of family members as representatives for their profoundly impacted children. If they succeed, only the stories of those with the cognitive ability to tell them will be counted. There is nothing more ableist than that."

I am not censoring any parent, and especially not one of a profoundly autistic child. I explicitly stated that and you are being incredibly disingenuous implying that I am.

What I am stating is that you have no right to define or minimise my struggle as a formally diagnosed “high functioning” autistic person. And that I’m trying to do so, you are revealing a very ableist attitude.