AIBU to not like the term 'on the spectrum' to mean autistic/has autism

[UndertheCedartree]

It really bugs me! Lots of conditions have spectrums so you could be talking about anything. It's so imprecise.

Also, I think it perpetuates the myth that there is one spectrum and everyone is on it somewhere so everyone is autistic to a greater or lesser extent.

@xyxygy I'm going to for the sake of conversation include myself as being one of the NT folk you write about.

One of the main pitfalls of this argument is that to recieve a diagnosis and therefore be autistic you have to have a considerable defecit in your social communication skills, so much do that your life is impacted. It is a mefical diagnosis. For many, not all this includes theory of mind. Why would these people be able to offer more of an insight into my sons world than I can who loves/ supports/ fights for him every single day from the day? The autistic people who you feel would be able to give insight have no idea what his life is like as they haven't lived it and possibly due to their dx would struggle to see that what he experiences is completely different to what they do. I do engage and find aspects of what verbal/ communicative people with autism say helpful and insightful but by the nature of their communicativeness and understanding of society norms etc usually their experiences aren't pertanent to my son. It more often is the case that we do listen but don't agree.

I don't believe in "a spectrum" where different people are impacted differently. My son clearly has a more severe disability than many of the diagnosed posters on here. I believe that Autism is an umbrella diagnosis of many different conditions which already includes what was/is PDD NOS, Kanners/ classical and Aspergers. Autism is more like a symptom of a different diagnosis yet to be properly given which as I've already said hopefully with developments in science (genes snd as I've learned brain function) more diagnosis will follow. There is already talk of profound autism being cut out as a separate dx due to the major difference in needs/ presentation. This could help those with fewer needs who want autism to be an identity/ difference as there won't be the argument of the more severely impacted people wanting it to be seen as a disability. It would reduce conflict.

Sorry OP for derailing, I guess my feelings about "spectrum" are clear. I really don't think it is a helpful term. I do when I need to say things like "not the side of the spectrum shown on tv" or "more severe side of the spectrum" when I'm on the phone and have to convey that his needs are more substantial than what whoever I'm talking to maybe used to without having to go into detail about his needs but would love to be able to he "has autism" and for that to be undeesrood as how he presents/ what he needs, so a euphemism. Thank you for also being the first person I've encountered on mumsnet who has a dx that doesn't automatically discount nt parents views.

I'm juggling with my phone and a few other things atm so sorry for the state of my post but I'm sure you can get the drift.

@Cuckoosheep - "I don't believe in "a spectrum" where different people are impacted differently."

That's the difference between "belief" and "science". You can believe what you like, but you'd be wrong - because you can only see it from the perspective of somebody with a ND child, not from the perspective of someone who is actually ND (y'know, the people who used to be ND children).

This is not me minimising your child's needs, by the way, or the way you support him. Yes, there are many people with varying degrees of support needs, but that doesn't mean they have entirely different conditions. Even within the group who have extreme support needs, their needs will be markedly different - but the cause is the same (comorbidities aside, of course). Do each of those need a different diagnosis too? Because if that's the case, you'd have as many different diagnoses and names for the conditions as you would people with the condition themselves.

"One of the main pitfalls of this argument is that to recieve a diagnosis and therefore be autistic you have to have a considerable defecit in your social communication skills, so much do that your life is impacted"

I have been talking all along about people who - like me - have been diagnosed autistic. It's not just "a considerable deficit in your social communication skills", it's far more nuanced and specific than that.

"as they haven't lived it and possibly due to their dx would struggle to see that what he experiences is completely different to what they do"

Because more of us have lived it than you think. Just because we can deal with the world now, after decades of pain, trauma and considerable effort at considerable cost, you seem to assume it's always been that way...and that's the fallacy in your argument, because 90% of the time it's not the case. Certainly wasn't for me. Because you can only see it from the outside, you can't see the commonalities between how we experience the world and the way he does - and you're lucky in that regard. This is known. That's why, by focusing on trying to separate those of us who can communicate eloquently into "something different" you're missing the point and the core of what autism is.

@xyxygy autism spectrum disorder is an umbrella diagnosis which contains previously separate diagnosed conditions. That is a fact, not just belief. The politics behind the inclusion of them under one term is more than them all being one condition/ science. Funding, research, politics etc all played a part. That's being replayed now with groups lobbying for at least some being separated again (profound autism).

Adults with autism ofcourse were children with autism but the fact that they're able to hold conversations similar to this and be offended or have understanding of why the social grouping is important is the difference. Some people will never be able to do that (not because of comordities, especially ld if that's the suggestion). The experiences are different and while there maybe some crossover, there maybe crossover with a number of people who don't have autism or have a different dx.

Hopefully and what is happening to some extent with genes is that mutations are being found and where there is a group of people with thd same presentation tue mutation of the gene is being linked. 100k genomes project is an example of where this is happening. Hopefully with more research and gene therapy this can be avoided in the future for some families. The autism having been caused by the mutation of whatever gene.

In order to receive a diagnosis you have to be assessed as having significant defects in the assessed areas which are broadly social communication, repetitive behaviours and social interaction. Sensory needs play a huge part too but sensory processing disorder can be a stand alone dx. In order to receive the dx you have demonstrative impact on your life. Autism is a medical dx.

How can you possibly know that you and my son have any commonalities, you've never even met. This is irrational, you say that everyone with autism is different yet assume you have an understanding of someone with the same dx? It makes no sense. Just because you have autism and have experienced things a certain way doesn't mean my son will have.

I am not missing the core of what autism is, i know exactly what autism is but what I view autism as and what you do are different. That is what I ment by I listen to people with autism about their experiences but don't agree. They're your experiences not his and as your not even privy to his life how can you declare you have a better understanding?

These arguments aren't new they're made all the time in the autism community. Identity vs disability, autism advocates vs parents and carers, high vs low. Non of which are helpful, they just stop research and put professionals off working in the area.

I should have wrote I listen to people with autism but don't necessarily agree.

The politics behind the inclusion of them under one term is more than them all being one condition/ science. Funding, research, politics etc all played a part.

Hi cuckoo
Can you expand on this, do you have any links?
I found your last link interesting.
I can understand why people may have wanted to distance from Hans Asperger
but I don't really understand why autistic conditions in the DSM-5 were collapsed (I'm not sure I like umbrella terms full-stop, same as trans umbrella albeit that's a whole other thread).
How did the things you mention play a part and what was the benefit?
TIA

Hi @SequinsandStilettos I'll have to have a look but in regards to:-
Funding: people with aspergers/pdd weren't having their needs met due to the assumption that they weren't impacted. By grouping them they come under autism they have access to services/ funding for what was classical autism (hope that makes sense, I'm sure you can dig out articles or anicdotle evidence of this, there's been a fair few discussions on mumsnet where this has been mentioned)/ harder for services to dismiss needs. This was campaigned for as some people's needs were bring dismissed.

Political: you already mentioned Asperger so I'm assuming you're aware of the Nazi links with this. Also lobbying groups; Actually autistic advocates in the US vs groups like autism speaks etc groups lobbying for what serves their needs. People with autism who are able to be more vocal/ communicative are going to be more successful in getting their views heard.
Research: plays into both the political and funding aspects.

I'll try to dig up some old articles from the time but unlikely to get it done today. There are some easy to get on the current lobbying for the separation of profound autism which will mention the initial grouping some of the reasoning is to reverse the impact of the grouping.

https://www.psychologytoday.com/gb/blog/inspectrum/202112/lancet-commission-calls-new-category-profound-autism

https://link.springer.com/chapter/10.1007/978-981-13-8437-0_13

Why does it bother you when people say everyone is on the spectrum somewhere? To me, this is an inclusive attitude and accepting of neurodiversity.
It makes me uncomfortable when Autistic people are thought of as fundamentally different from ‘the rest of us’.

Ah, I should have read the full thread before wading in with that question, sorry! Will now catch up on what’s been said already

Because it’s factually wrong and downplays the genuine struggles autistic people face. Because if everyone is a little autistic, autistic people don’t really have the right to find life difficult and ask for accommodations, do they?

It's not inclusive it's negating the struggles autistic people have. You can empathise with traits, but it doesn't mean you're a bit autistic. I've learnt from my son that I am sensitive to some sensory issues, but it's not disabling like it is for him.

Just to add before the dsm v there was other conditions Inc as autism which were then given separate dx in the dsm v. I'm 99% sure rhett syndrome was one of these but would need to look it up to check. Asd is an umbrella term for what we're previously distinct dx.

In the political/ lobbying section too, I would add that parents would have impacted diagnosis as they would have had to say if a child/ person spoke before the cut off age. On occasion this wouldn't have been known and dome parents would have preferred an asperger dx to autism because of the social understanding around these dx in the same way some people prefer to describe themselves as gaving aspergers still because it is understood by most in general terms to mean not ld rather than refer to when someone started to speak.

Diagnosing autism isn't a science though, it is based on professional judgement against criteria that are still evolving.

The process is quite hit-and-miss, especially for people who are higher functioning / have lower support needs. Some people will get a diagnosis from Team A, but wouldn't from Team B. Hence you hear of people ‘shopping’ for diagnoses and getting a private one when the NHS have not given one. So it becomes a case of ‘where do you draw the line’ rather than a ‘factual’ distinction, if you see what I mean.

@hereiamagainn Why does it bother you when people say everyone is on the spectrum somewhere?

For the reasons others have given but also because it's not correct, and, because it shows a lack of understanding what a spectrum is.

I agree with this. I've heard a mum refer to her child as failing the autism test because they didn't get a dx.

I also think many people have traits but they don't have enough of an impact on their life to merit a dx. I know I have traits but I don't need a dx or struggle with their impact. Unfortunately I also think this means some people can say what they need to to get a dx also. It all goes to undermine the dx and I think is part of the reason some don't get the help and support they need.

Oh, no, you're not derailing. Your experiences and opinions are very useful to hear. There is definitely a conflict as you say because for some it is empowering to have autism described as a difference, but for some it is just not useful.

Because it's not true. People with autism have additional needs (whatever you want to call it) and experience things differently to people who are not autistic. We don't just have the same needs/experiences as everyone else but just to a greater degree.