Review of the National Autism Strategy ‘Think Autism': call for evidence

[ByGrabtharsHammarWhatASaving]

Might be a good chance for anyone here who has or works with children with ASD to raise concerns about the NAS, the links between ASD and GID, and concerns in general about the effect of trans teaching in schools on children with ASD.

Personally I'm 40 and I've got 3 attempts under my belt. Chris Packham has 2.

I’m sorry that’s been your experience BishopBrennansArse.

Life expectancy of 40 (or just under) is not for the whole autistic population (though it is less than the nt population for all autistics), it’s specifically for the group I was voicing concern about.

www.nhs.uk/news/neurology/people-with-autism-are-dying-younger-warns-study/

I love people in both groups.

Such ignorance and generalisation based on ignorance! We face so much from some medical professionals and NT world but it is shocking coming from the autistic community.

DS2 was referred to SALT at 2.5 for speech delay and still has articulation issues at 13. His primary school insisted on audiology investigation because they thought he couldn't hear. They called in EP when he was 7 because they thought he had LD - although not hearing impaired he ignored his name and instructions and struggled to write at all.

Imagine their shock when objective cognitive assessment revealed him to be on the 99th+ percentile. So they ignored it - didn't compute - and continued to treat him as below cognitive average (he now has a personal budget to attend internet school as brick school insisted that he must be in bottom sets to get LSA support because school doesn't meet the need of 'twice exceptional' DC - today he was laughing at how easy tangent ratio in right angled triangles is and is predicted A* in maths iGCSE next year).

But the visible/audible 'deficits' meant that he ticked the boxes and we never had problems getting an EHCP etc when he was a m/s primary. It 'just' affected his self-esteem etc.

DS1 had no speech issues (beyond selective mutism) but we have had to fight (Tribunal, judicial review) to have his educational, health and social needs met. Whilst DS2 will complete education and get a degree and probably study to PhD, post-doctoral level, work, live independently etc, DS1 was unable to attend even ss school beyond 14 and every day is a struggle to keep him alive. Perhaps there is a connection between lack of early intervention and outcome? Between saying one autistic child 'deserves' support but another autistic child with a different presentation (but higher need) does not?

Unbelievably, the only agency that seems to recognise the needs of chronically anxious HF autistics with no speech delay are the DWP and so DS1 is eligible to receive higher level social care PIP and ESA in the not-expected-to-work group.

I used to post and regularly read the SN boards. There was no conflict between parents with so/called LF and HF DC. The struggles were different but whilst those with verbal and mobile DC struggled with diagnosis, appropriate schooling, tribunal, hearing DC saying they hated you, being told your DC was 'fine' etc, those with non-verbal or mobile DC struggled with constant appointments, SN buggies, never hearing your DC say they loved you, being stared at etc we all shared common experiences and empathised rather than competed with each other.

And let's face it @KeepOnKeepingOnAgainandAgain the impairments we have are the same whether verbal or not - to get a diagnosis we all have to have the triad. We just react to our triggers very differently.

Itwouldtakemuchmorethanthis

You haven’t clarified what awful comments I made about autistic people. Instead you said I was bullying you to ask. If you’re going to accuse me of something, you ought to make it clear what was said or apologise to me. Nobody else on here thinks I have made awful comments about autistic people.

You don’t know what anyone else thinks about your comments.

I will trawl back through your posts if I have time later this evening, are you planning on persuading me I liked what you posted?

I’m surprised that the only reason people can imagine someone would have a differing view to them is that that person is ignorant. I can think of lots of reasons why people think or feel differently to me. I can imagine prioritising MH in the autistic community, or prioritising speedy assessment, I don’t agree but I don’t assume you are ignorant. You are choosing to believe I have some sort of agenda against autistics who are more independent. That I am denying their disability and want to deny their difficulties. When I think about my agenda if I even have one is the invisibility in society of dependent disadvantaged often non-verbal autistics who make up more than half of the population. I know how hard it can be to be an autistic in the uk. (Apologies to pp from Australia I have little if any understanding of the set up or attitudes there, but I do know Australians exclude autistics from their immigration process as do Canadians).

Right so you consider those who can speak to not have any of the same issues of those who cannot? That's the ignorant bit. Of course we do. We have the same impairment pattern, it's only the expression that differs.

I don’t think anyone here has told you what to prioritise or what should be important to you. At all. I keep saying this so I’m not sure why you’re going on about things not said to you. What you were saying was, advocating for the undiagnosed adults and girls would take away resources from those who needed it more, then you proceeded to question me when I said even articulate autistics can have autism greatly impact their life. Your words were insensitive at best, but in my view and several others, ignorant to how autism affects others who present differently to your child- who you have specifically referred to.

You’re being very strange. Nobody here has said anything about my comments being awful to autistic people but you, to suggest people might be thinking it is just more deflecting and frankly, absurd and childish. Let’s deal with what has actually been written and that several people are offended by your comments that minimise the impact of autism on verbal articulate people who are not visibly disabled- your words.

If my comments were so awful, I would think you would have referred specifically to the comments by now. You haven’t, so trawling back to try and create something from nothing is what I’m assuming you’re doing.

Take responsibility for your words and the hurt you have caused on this thread.

I’m surprised that the only reason people can imagine someone would have a differing view to them is that that person is ignorant.

No no, not ‘a differing view’, but incorrect and insensitive assumptions about how autism affects people. You can’t have a view on that, you’re not them.

Just to clarify again that this whole argument occurred after this comment:

itwouldtake I do see your point. I guess the solution is to push/campaign (as jessica says below) for better understanding/diagnostic services for adults in particular.

So the issue was better understanding and diagnostic services for adults ( previous discussion including anyone who struggled to get referrals for assessments, like girls and women ).

That is the topic we have been debating. Why would anyone have an issue with better diagnostic services or understanding, for anyone????

Right so you consider those who can speak to not have any of the same issues of those who cannot?
No. Categorically no.

Yes I find your assumptions and understanding pretty awful too about ME, not about autism. I don’t know what you know about autism just as you don’t know my experience.

about ME, not about autism. I don’t know what you know about autism just as you don’t know my experience.

So even though I responded at 11 today, clearly asking what awful things I said about autistic people, you’ve waited till now to clarify you meant about you. Right. What about everyone else who has an issue with your comments?

No no, not ‘a differing view’, but incorrect and insensitive assumptions about how autism affects people. You can’t have a view on that, you’re not them.. I don’t have a view on how autism effects any individual. I believe some people are more disabled by their autism than others and I actually think it’s slightly ludicrous to suggest otherwise.

I believe some people are more disabled by their autism than others and I actually think it’s slightly ludicrous to suggest otherwise.

Nobody here has debated that. What has been argued, is that you can’t know and you can’t tell just by looking at someone. You’ve used terms like ‘articulate autistics’ and ‘ visibly disabled’ and questioned me with regards to ‘greatly affected’ and if someone who works, votes etc is ‘greatly affected’.
The issue here is your references to those undiagnosed and assumptions made about them initially in this conversation. I’m tired of explaining to you what is being discussed every time you attempt to change what you originally said.

Oh I don’t fucking know Jessica. I’m trying to keep up with the flood of assumption and outrage but I do have to do other things. I’m aware you are upset and it seemed polite to offer to read back and clarify. But you know what? Fuck that. You are just going to rephrase anything I say as “you don’t understand autism, you think autistics who can talk have it easy, and on and on”. Nothing could be further from the truth. The people I admire most are autistic, many of the people I love are autistic, i shares a lot of traits with autistics and a lot of challenges, I will be part of the autistic community albeit as a crutch for the rest of my life, so no your venom doesn’t seem just or fair.

Nothing could be further from the truth.

If this is true then you wouldn’t have written what you have written in this thread, which several others including autistic people have been upset by. Why do you find it so hard to apologise?

I don’t find apologising hard at all. I find you very hard work.

Ditto

Yeah right. Social Workers also believe he must have some hidden rain man capabilities because thats what their training has told them and that's one example of the problems that arise when a select group speak for everyone on the spectrum.
No-one is speaking for everyone on the spectrum! The social workers are just as wrong in their assumption of Rain Man, as you are in your assumption of non-verbal equating to learning difficulties.

There's a documentary called Autism and Me that aired on RTE (it's available to watch on Amazon prime at the moment) which illustrates the complexity of autism and how limited the usefulness of labels like low and high functioning really are.
And before anyone says they don't want to watch another documentary dominated by the voice of "high functioning verbal autistics who claim to speak for the severely autistic" you won't be. The documentary is pretty well balanced, two of the six people featured have an Aspergers diagnosis. The only imbalance was the fact only one female is featured.
One of the boys Fiacre, is 15 or 16. He's severely classically autistic and non-verbal. He's also capable of sitting his exams - in theory. I say in theory because he can't speak, write or type. He communicates via a letter board. Now he obviously has an IQ over 70 but he's never spoken a word. So to posters like Thingybob I ask you, is he high functioning or low functioning?
Where do people like him who are non-verbal, have a normal IQ and are doing well academically but need a huge amount of daily care fit into your overly simplistic low and high functioning system?
And Thingybob, I guess in your world you would just automatically assume he had learning difficulties, right? Because according to you "the two go together."
You and your assumptions are no better than the social worker who thinks autistic people all have rain man type skills.

At the start of the documentary Fiacre explains why he wanted to participate in the documentary. It's perfect so I'm just going to quote the whole thing: "I want you understand that the program is attending to my cause. I'm afraid of people who feel that people with autism are less than others. The worst thing is that people think we are stupid, but we are people who understand so much. Let our opinions be heard."

Tell me, what pretext will you find to silence him? Will you say that because he has a normal IQ, that even though he's severely autistic and non-verbal that his voice doesn't count either?
Why do people like Thingybob feel like they have more right to speak about autism than actual autistic people? And why do people assume you are a capable functional (or verbal for that matter) adult just because you can type/write on the internet?

There's another boy featured on the documentary who is similar, only difference is he's verbal and can't manage at all in a mainstream classroom. How many people would look at him and just assume he's not majorly affected by his autism? Going by some of the posters on here I'm going to guess quite a few.

The child you described is HF if he has an IQ over 70. The fact that people misuse the term makes communicating about autism more difficult. Verbal ability isn’t part of the ASD criteria at all any more. To be fair to the person who linked verbal communication with LD, there is an increased likelihood of LD if you are Language disordered in the absence of asd. I’m not sure how that presents in the autistic community where communication difficulties are more complex anyway.

The child you described is HF if he has an IQ over 70. The fact that people misuse the term makes communicating about autism more difficult.

Do people even realise low and high functioning are completely arbitrary categories?
How could a person who needs 24/7 care be described as "high functioning?"
I would ask you to link to the criteria for high or low functioning autism, but I won't bother because I know no such thing exists. Neither are a proper diagnostic term, merely an informal one which is used and twisted to suit whatever the person using it wants it to mean.
All of this demonstrates how stupid functioning levels are, the fact you call a person who is severely autistic, non-verbal, needs constant care, was diagnosed before age three "high functioning" just because he has a normal IQ. That illustrates perfectly how pointless such labels are.

You're not exactly correct, true verbal ability isn't part of the diagnostic criteria, but the three levels of ASD (which are meant to represent levels of severity) do mention language development, or lack of it. Also the new DSM says each diagnosis should note if a person has autism with or without learning difficulties, thus making it clear they are not an integral part of autism. There's not much I do like about the DSM changes but that is one of them.

Level 1 is meant (in theory at least, because personally I think this system of levels is just as bad as the whole low/high functioning thing) to be the equivalent of Aspergers and the wrongly used term HFA. Its supposed to be the people who need the least help. So I guess the DSM disagrees with you. The level 3 description clearly mentions people who have no or little speech. And level 1 refers to people who are very articulate. My point is there's no way someone with his needs would be described as having "level 1 autism" aka HFA or Aspegers.

Why does the term high functioning autism hold such currency when it's no use at all? Like I said the DSM gets that right at least, simply noting whether or not a person has learning difficulties or not. Because the terms high and low functioning don't tell you anything about that person and the impact their autism has on them.
www.verywellhealth.com/high-and-low-functioning-autism-260599

I’m confused by your post. HF and LF very much DO have definition and meaning when they are used by people who understand they are nothing to do with how well you manage day to day.

It’s relevant to just about everything but particularly to those who’s communication is severely limited. It’s not an indictment of a persons character to say they have an IQ under or over 70 but it’s certainly important when planning support. For example an individual with autism might use pictures to timetable their day and processes like washing dressing. That might be appropriate for a child or a very “visual thinker”, but an adult or higher functioning individual might find a todo list or a diary a more appropriate prop.