... to share this explanation of the Autism spectrum

[KihoBebiluPute]

This isn't a thread-about-a-thread but I wrote a version of the below in response to another thread that then got deleted before I could post it. I think it's useful information so thought I would start a new thread that isn't about one particular person but just general info.

Posting in AIBU because the original thread was here though.

The Autism spectrum isn't a line from "mild" to "severe" - it's like there's a colour wheel, and each person's symptoms are like a different cut-out shape across different sections of this wheel, so no two people with autism have exactly the same issues to contend with. There isn't a "mild" end of the spectrum which is almost the same as being a neurotypical person - NT people are not even on the same colour wheel at all. Terms like "mild" and "severe" are really unhelpful because they tend to refer to how much the issue is perceived by a neurotypical person. Someone can have a particular issue quite severely in terms of how much stress and difficulty it causes them, but may mask the issue. Obviously some people have much more significant challenges than others and may have additional conditions as well as the ASD, but people who are able to function to some extent in society don't have a less intense type of the condition, they are just affected in a different way.

I agree fastwiggly

For context, my brother is in his 30s & is ‘profoundly’ autistic (trying not to offend anyone!). He is unable to live independently & when he was in school (special school) required a 3:1 ratio (adults:him) to be allowed in school. He was regularly sent home to my mum from ‘respite’ care as he was too challenging to cope with. He is verbal & not incontinent - he is cheeky & loving, yet has toddler-like tantrums (undoubtedly through frustration & anxiety) which cause huge problems as he is 6ft tall & very strong. My entire childhood was dominated by his autism - there could be no spontaneity in our house! He also attacked me & my family regularly, completing destroyed rooms in the house, ran away, set fire to the house ... I could go on! I love him dearly - but there’s no question that his life (& my family’s) has been adversely affected by his autism.

My question for those of you who view high/low functioning as a question of IQ - how do you possibly measure IQ in someone who is so profoundly autistic? I find it impossible to distinguish his autism from any other ‘learning difficulties’ as to me his difficulties learning are as a result of his autism. I believe he is very bright - he learns quickly (if something is of interest to him), has developed ingenious methods to escape over the years(!), has a photographic memory for directions & can play music by ear - yet learnt to read at 15 years old, can only perform basic calculations etc because it is no interest to him. How can you possibly measure his IQ (not being goady - I’m genuinely curious).

As a final point (apologies for waffling) it saddens me that there is such a divide between autistics (sorry if that’s the wrong term to use) who are able to speak about their difficulties & family members who are carers of those who cannot speak for themselves. I suppose it is inevitable that emotions run so high, but I don’t believe that fighting for your own rights (or those of a family member) needs to automatically be an attack on others in a very different situation. I hope that some recognition, tolerance & respect can be reached between these divergent groups xx

The problem is @Tryingtodanceintherain that “be kind” when one group is engulfing another, may sound “nice” but isn’t very sensible or admirable. There are no autism specific groups and activities for the more severely impacted, in my area, little funding and even support groups for carers are dominated by families of more able autistics and the self diagnosed. Are you asking me to sit in the corner while people who think it’s “easier” to be totally dependent suck up all the resources?
As far as non verbal IQ tests go, I personally think they are quite poor, but the man you describe could easily have HFA, (that is a normal plus IQ).

@5zeds I respect your position & believe me I know all about fighting for provision due to a lack of support & resources & a system which lets you down time & time again - I just don’t blame those with a different experience of autism for that. I don’t find the narrative that one group is ‘robbing’ others of support & funding helpful. I genuinely hope that you get the support & provision you need for your family.

One persons “narrative” is another’s fact.

So people with high functioning autism are robbing resources now? Why are they less deserving? Why are they seen as the villans?

With the IQ they tend to measure the functionality, so with DS2 he is diagnosed with a learning disability which is recognition of a lower IQ and while there are areas of some intelligence on the whole his weak areas are more disabling than his higher areas. But this is not generally done until the person is older as the autism can mask the intelligence. With adults their originally diagnosis would usually cover the IQ. The music abilities could be more seen as savant abilities.

So people with high functioning autism are robbing resources now? nope. But I’d guess your understanding of what HFA means is different than mine.

Thanks @Boulshired - I appreciate your input & from a personal perspective, my brother would be classed as low functioning as he was diagnosed at 2 & would never be able to undergo a formal IQ test. I just find it difficult to disentangle which difficulties are a direct result of his autism as he has no concepts (eg. prepositions are meaningless, he never uses the 1st person) & although verbal, most of his speech is echolalia. I guess I just find it simplistic that people seem to infer that low functioning necessarily = lack of intelligence, when there are multiple forms of intelligence.

suck up all the resources??

I’m not sure who is doing the “sucking” as I’ve never met a parent of a child with HFA in mainstream getting any support whatsoever

I just think no one is getting the help they need - whether “classically” autistic or HFA

@IdesMarchof - agreed, which is a travesty. There is understandable anger & frustration all round - I just don’t think viewing the fight for resources as an ‘us v them’ battle helps anyone.

I think there's more to it than funding and support. It's policy and the narrative going forward. Vocal and articulate people with autism are shaping how the condition is viewed, the therapies to help, social care and research (genetic vs eugenics).

Families like mine are being told that their voices (speaking on behalf of loved ones who can't) arent as valuable as those with autism and therefore shouldn't have a say.

The problem is that the hf vocal people with autism have never experienced severe autism and cant see or understand how devastating the condition is or the needs of the person severely affected.

Organisations are pushed into a position of having to side with the vocal groups or face accusations of ableism. Meanwhile the person/ people with severe autism and the people that care for them become more and more on the peripheral.

Have a Google of #actuallyautistic and parents, I'm sure this wont be the first argument/ discussion of this nature.

I’ve never met a parent of a child with HFA in mainstream getting any support whatsoever really? Do you mean the parents aren’t supported or the children? Here there is lots of support in school for children units from units, to TAs, to CIT guidance, nurture groups, chill spaces, traffic light systems, lunch clubs etc etc.

When it comes to social service and education there is fight for everyone regarding funding. Were those who would have been diagnosed as classic autism are being ignored is in the autism awareness and within the Autism community such as the autism society. Groups run for children with autism run by charities that are anything but friendly for children such as my own.

@AgntOso - I think that’s a very valid point about how the condition is viewed & I agree that no-one has the right to tell you that you can’t view autism as a disability (even if others view is as a positive ‘difference’). I mentioned earlier that my brother’s autism has had a devastating impact on every aspect of my families’ life (even though we love him dearly) & for anyone to suggest otherwise is insulting.

I still think it’s unhelpful for people to make inflammatory & derogatory remarks about others, with limited knowledge of how they are affected by autism (that isn’t aimed at you btw).

As someone with a child with high functioning autism, as well as other adults in my extended family, I just don't agree with this.
When I went to the post diagnosis workshops I almost felt an impostor. The impact of autism on some of the other children's lives was so extreme compared to the impact on my child's, I can think of no other way of describing my son's reality compared to theirs as milder/less severe.
My son is 'quirky', but is socially motivated and has friends at school. Though I notice he is immature, he is well liked and is able to play with other children, fitting into their games. The most recent ed psych who observed him at school remarked that he is unusual in his social success for a child with high functioning autism. He doesn't require extra support at school(other than the teacher led strategies), and has no behaviour problems.
He does struggle to make eye contact, is obsessive about interests(but quickly adapts these to what other children are into at school), has sensory difficulties(but nothing that would cause a melt down) and many other mild quirks of autism. My child was diagnosed at the end of primary school, after much indecision by school, and us, as to whether he should be assessed.
Some of the other families were dealing constant violent meltdowns, non verbal kids, children who wouldn't eat more than 2/3 foods, who couldn't go to school, who had zero interest in other children, or if they did, had no way to communicate with them. I felt so much for these parents, and I feel it would be unfair to describe my child as anything other than 'milder' or 'less extreme' in their autism than my child.

That sounds amazing @5zeds I need to move to your area. Here no one I know personally is getting anything. The most I know is half an hour nature group x 1 per week run by a TA and most are getting literally nothing.

No SLT, no one to one, no social skills focused groups, no OT, no CAMHS support etc etc

presumably someone must be getting these things even here but it’s not like the local authority is throwing funding at dc with HFA

Amd as I mentioned I also have a family member with very significant personal card needs and that child’s parents don’t get what I think they should be either: everything is a struggle to get

Sorry nurture group not nature group

Fastwigglylines you expressed what I think feel, much better than I did in my own post. I agree with you entirely.

The problem is that HFA (as a diagnosis of average or above IQ) causes many people to assume that those people are high functioning on a practical level. It does not relate to the problems caused by autism and is a barrier to support and a decent standard of living. Someone can still be severely disabled by autism and have average intelligence, but unfortunately a lot of people assume that those with HFA are just 'quirky' with 'mild' difficulties, leaving a great deal of very disabled people with no support. Just because someone is deemed to have HFA doesn't mean they can live a decent life independently but unfortunately some people like to lump all those outside of non-verbal with low IQ as being 'high functioning' and minimize all their difficulties. The initial post about the color spectrum can help people to understand that it's not 'profoundly disabled in every way' OR 'a bit weird'. There is a HUGE area in between where people with average or above IQ are profoundly affected by autism and it's about time that started being understood and those people got the help they need. To try and take their voice away and set them back even further is awful. Continuously telling people that they aren't autistic enough to deserve an autism diagnosis (just because they have a typical IQ) is twisted and blind to the reality those people face. It's fine for anyone who doesn't feel affected by their autism to call it mild or not mention it at all, but it's unfair to be angry at people with average IQ for trying to finally get understanding and therefore support for the profound difficulties they face.

If you have a normal to high IQ, are autistic and struggle to communicate having people know you have HFA is NOT a barrier to support. It’s fairly key to any chance of receiving appropriate support. Has anyone said people “aren’t autistic enough”? I think what was said was the impact of autism was different for different presentations. Arguing to remove a descriptor that helps those who have little chance of being able to help themselves is beyond unfair.

I do have the same disability as your son. Maybe not to the same level, but we are both autistic.

The issue is that the 'high-functioning' verbal people with autism have become the 'face' of autism - the child in mainstream school who is a bit 'odd', who maybe even has a 1-2-1 TA, but can manage, has become the layman's idea of what it means to be autistic, when 25- 30 years ago they wouldn't have even been considered autistic.
I find if I tell someone my adult son has autism (diagnosed 25 years ago), I feel a need to also add that he has a learning disability, so that they can understand that he isn't just a quirky/nerdy bloke, and needs 24 hour support and lives in supported living.

I find if I tell someone my adult son has autism (diagnosed 25 years ago), I feel a need to also add that he has a learning disability, so that they can understand that he isn't just a quirky/nerdy bloke, and needs 24 hour support and lives in supported living. I do this too now in some situations.

I hate people who don't have autism and telling people with autism what it's like JUST ASK US JEEZ