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.

Sorry @Walkaround i obviously wasn’t clear. I was talking about access to the community for more severely disabled children and adults like Lego clubs,sports and social groups or health and education. Every area has an amount of provision but the provision identified as for autistic people isn’t always there even if it appears to be. You asked how this could impact those with higher support needs and I would say if your council provides X autism specific services but none of the frankly often much more expensive services for those individuals then that’s C a problem especially because you may not be able to access community in any other way.

The dangerous self ID community in my view are the ones who post on social media (Twitter seems to be particularly bad for it) with a determination to minimise the struggles of others arguing that their experiences as an “actually autistic” person make them the experts on everyone.

They're the ones saying it's not a disability. Fine if you think it's not a disability. But don't go around telling people who are actually diagnosed it's not.

If I wasn't disabled by it I wouldn't have bothered doing research and asking for a referral to get diagnosed.

@Itisbetter - in all honesty, I don’t think the problem there is higher functioning people, it is councils starved of funding not wanting to make provision even where they privately recognised it is needed.

@Walkaround I think part of the issue with services and research is that the more able/ vocal/ communicative/ articulate are able to take part in discussions, lobby, make their thoughts on what they need known, "they get a seat at the table" I think the saying is. With companies, service providers snd local government all wanting to show that they consult and many have tick boxes this group are easy to fulfill that, especially if the "nothing for us without us" are vocal in the area. The less communicative by nature of their disability aren't as able and are mote difficult to include. More faff.

I think it's not as clear cut as that. There are venues for parents of disabled children to express their opinions and views on services - it's just not as obvious due to the proliferation of one man band consultants around neurodiversity.
And yes I know those parents may be exhausted and not always able to participate but I didn't want to not mention it.

To be fair, having been peripherally involved in similar things (usually around issues other than autism, but it works the same way), the single, crappy, last minute "sorry you'll have to drag a cleaning stool over cause there's no chairs left" seat at the table is generally reserved for a preselected, fully tame, briefed and compliant individual, who's well aware of the power differential and the role they're required to play, and who may well be a member of whatever group "representation" is needed from, but more importantly can be relied on not to rock the boat or frighten the horses. It's not their fault, but they rarely seem to represent anyone, even themselves.

@OneFrenchEgg I know there are. In our area its via the parent forum but they themselves have to give a view across the board and ultimately there seems at least to be more families that take part whose children are more able. The way the council deal with this is to offer budgets for PA'S so that the more complex children can be taken to activities of their choosing (gives the parents a short break and the child access to social activities). The problem there is 1) recruiting PA'S- there just isn't any and 2) there then isn't any activities to access because they've been set up for the majority.

For adults this is slightly different as there are day centres.

I think this is extremely relevant to research in particular because the most complex group do get left out, research shut down if the particulars aren't worded in the appropriate way (already discussed the autism genome study) and in the areas researched. Families generally want different areas looked at than the more vocal autism individuals. I believe these are similar to the reasons given in the Lancet report for the use of profound autism. So at least recognised by dome of the wider community enough for it to be highlighted.

@JarByTheDoor I've fully witnessed that myself and I'm ashamed to say played a part in when I wanted something changing for my son which wasn't directly linked. Kind of a I'll scratch yours if you scratch mine.

Miserable isn't it Cuckoo? Then the high-ups get to wave about whatever terminology their sector uses, like "service user coproduction framework facilitating lived-experience participation according to the principles of a person-led and client-centred service ethos", before digging into the good biscuits reserved for those who aren't expected to work for free.

Ca1mingC1arySag3 how is claiming to have a diagnosis one doesn’t yet have the ‘right thing for them’? What specifically prevents someone from saying they suspect they have autism/are autistic or are waiting for diagnosis?

I didn’t suggest you or anyone else’s autism miraculously wasn’t there before diagnosis. But the point is statistically some of those self ID’ing actually won’t have autism if they were to be assessed.

cuckoo ours seems to be largely parents of children attending SLD school, I imagine they become quite focussed maybe rather than covering all needs. Just wanted to add to the conversation.

I'm not too keen on PF's if I'm being honest. Their funding from contact is to work with LA's. Ours have vast parts of our local community not represented such as certain ethnicities. I don't really put much faith in sendiass either. I guess I'm just a bit sceptical. Don't mean to sound awful if anyone finds them valuable.

@Spendonsend thank you for replying, that's really interesting to know!

I personally am really interested in what is going on in the support space, both from the perspective of personal curiosity in what might have been different for me growing up, and in the wider context of interventions.

I wonder at what age I would have been diagnosed these days. I saw a speech therapist at 4 because apparently I was skipping words and parts of sentences when I talked, or I was talking oddly. I reached all of my milestones before the age of 3, but I wasn't night trained until 7, and I drank from the bottle until 8. I know I made little eye contact because 'look at me when I'm talking to you' is the mantra of my childhood, though I can maintain eye contact as an adult. I got in trouble for violence and not playing with other children both at pre-school and at primary, but that stopped when I reached high school. I think people just assumed I wasn't well adjusted because I was from a 'bad' family, but I can't know for sure of course.

@Cuckoosheep - yes, of course, in 100% of areas of life the more articulate you are, the more attention is paid to you. But that applied before the merging of diagnoses, not just after. Society does not cater much at all for the disabled unless they are very vocal and don’t give up, which is self-evidently far too much to ask of the more seriously disabled, who need to be advocated for by others. Since austerity really bit, even the mainstream, with its standard issues and needs, is poorly catered for.

You cannot really blame the less severely disabled for advocating for themselves - it is what everyone does, so it is not really fair, sensible or realistic to argue that if you are autistic you should not advocate for yourself unless you are not very good at advocating for yourself. Unfortunately, when it comes to funding, advocating for yourself does mean convincing others there are enough people like you to make it worthwhile to provide funding at all.

@Walkaround no I 100% think I would support my son to advocate for what suited him if he was able to but what I can reflect on is that because they are advocating on behalf of the "autistic community" that they are either claiming to be speaking for all people with autism or are taken to be speaking for all people with autism. I know it doesn't apply to everyone with autism, as this thread has shown but some people with autism because of their autism are unable to see the impact and there are also those who say that those with complex needs have ld also which isn't true and so justify their stance on this. The recent doc with Chris Packham even said that most people who struggle to communicate have ld and kind of glossed them over because it was too difficult to include them.

I must add in my experience it is incredibly unusual to be able to have this type of conversation without it ending up in a full slanging match. I'm actually quite shocked and grateful to the posters with autism going against self Diagnosis and engaging in this.

I must add in my experience it is incredibly unusual to be able to have this type of conversation without it ending up in a full slanging match. I'm actually quite shocked and grateful to the posters with autism going against self Diagnosis and engaging in this.

With a few difficulties we've managed a civil conversation. This is an area of interest to me as a late diagnosed adult and parent of young autistic people with/without mental illness.

@Cuckoosheep - but since the well known saying goes, “if you’ve met one person with autism, you have met one person with autism,” I really don’t think anyone claiming to speak for the entire autistic community is legitimately and in all good faith being taken to do so. The fact remains, if you cannot advocate for yourself and nobody else knows what is going on in your head or is advocating for you, then you will not get funding or support, because it does not suit those with tiny pots of funding to go out of their way to look for the people who are incapable of standing up for themselves to try to offer them support that they are getting no feedback on one way or the other, because the person receiving it is incapable of communicating with them. That is not the fault of the people saying they want support and they know what works for them.

In the land of the blind the one eyed man is king.

Except autistic people do not live in a land of the blind, they all live in a mainstream world of seeing, speaking people who make the decisions on which disabled people get what and who are quite happy for autistic people to fight amongst themselves rather than see that there is strength in numbers, because then the holders of the resources have the excuse they want not to cater properly for anyone.

Except that there are people in the mainstream and professional realms that have seen the problems hence the Lancet report and parents who advocate. By the same token our views cannot he easily dismissed and should be as a minimum be given the same weight except for the limitations given to that because we are not "autistic" which is initself a tick box when talking about services for the autism community. I am going to post either the Lancet report or an article on it because I'm struggling to get the views across which are also conveyed there. Not only because they will be communicated better thzn i can but because i hope that it can be seen that it isn't just me alone with these views because of the people that inputed into the report. I am aware that after it was written thee was many open letters etc opposing it.

www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)01541-5/fulltext

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

I wish there was strength in numbers, I'd love for my son to not only be accepted by the autism community but advocated for on his behalf, it would be heaven Sent given the fight we have but it just isn't the case unfortunately. He sits outside his dx and outside the nt community. Some of the "autistic" community for him off like a stain as he doesn't fit with diversity.

Maybe as a pp said if the neuro diverse and self diagnosed identified as something else and then language was
OK to be used without fear of being called ableist that would be a big step forward. It would allow all autism to be seen as a disability and allow free conversation.

I think it's valuable and it'd be amazing if this could happen on more levels.

I do understand the reasoning, but was there ever a heyday when there was a lot of funding for research into profound autism? Hasn’t the problem always been that there is a lack of will to sink money into research to benefit the profoundly disabled with complex needs and probable multiple aetiologies?