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.

It may not have been a requirement but the vast majority did have a learning disability due to them needing to present with significant speech delays. The two go together

Thingybob the two do NOT go together. My word, you're out of your depth here though lack of knowledge, but you keep on going regardless....

• through not though

And if you want a lobby group that advocates for the whole spectrum, name one thing that you would lobby for

Greater understanding- to avoid conversations like this!

It may not have been a requirement but the vast majority did have a learning disability due to them needing to present with significant speech delays. The two go together

Really, because on page one you said this: "A LD was a requirement for Classical Autism and that is why it is different to HF types."

So which is it, huh? On page 1 you say it was a requirement, and now on page 5 you are backtracking ever so slightly and saying "it may not have been a requirement."
Seriously what the fuck do you know about autism when you can't even keep your story straight between pages 1 and 5?
A significant speech delay does not automatically equate to the person having a learning disability.

And if you want a lobby group that advocates for the whole spectrum, name one thing that you would lobby for

Services to support adults to live as independently as possible? You know because adults with so called high functioning autism can't always manage that either?
Or how about more awareness amongst healthcare professionals so that autistic people aren't treated as subhuman, so they aren't talked down to by people like you who assume that just because they can't communicate verbally that they don't understand what you're talking about.

I too have done a lot of work with children and adults with learning disabilities, many with autism. I've worked hard to advocate for their needs. I've even got national policy changed for the better in the past, working side-by-side with self-advocates. I started doing this long before my children were diagnosed. They broadly fit the old Asperger's diagnosis and are in mainstream education.

I don't think this is any way contradicts my desire to advocate for my own autistic children and to argue that the tiny amount of funding that is allotted to them continues.

Please don't deny my children don't have issues. Of course life is not as inaccessible for them as it is for a child with a learning disability, autism and complex needs. Because of my work they are very well aware of that. But life is much harder for my children than it is for most of the other children I know.

And my life is harder caring for them.

"Please don't deny my children don't have issues"

JanMeyer
"Services to support adults to live as independently as possible? You know because adults with so called high functioning autism can't always manage that either? "

One of my children may well need this. He's 16 and can't make toast. He can't wash himself properly either. He should, at some point, be able to qualify for university but whether or not he could actually go is a totally different matter.

One of my children may well need this. He's 16 and can't make toast. He can't wash himself properly either. He should, at some point, be able to qualify for university but whether or not he could actually go is a totally different matter.

And in terms of supporting adults, there needs to be more awareness that just because a person doesn't have a learning disability it doesn't mean they won't need significant support in terms of every day life.The assumption is now that if you are autistic and have a normal IQ you can take care of yourself, when as posters like the one I quoted above have illustrated is far from the case.
One of the main points of contention in the past when disagreeing with parents of autistic children is that some of them have attacked autistic adults with the view that "you can go to university, my child will never do that, so you aren't disabled like he is."
And I am so sick of people like them judging how disabled someone is by the words we write on the internet.

A significant speech delay does not automatically equate to the person having a learning disability.

I’m really pleased you said that, it’s a really important and misunderstood thing with autism and speech delay. My DH was never non verbal but he is very quiet and doesn’t like mindless chit chat. He used to spend his lunchtimes sitting alone saying nothing, ‘ for a break’- obviously sensory related, and it freaked everyone out around him. They thought he couldn’t hear for a long time because he didn’t speak much or when he did stuttered quite a lot. But he now does a lot of public speaking as part of his job and is in meetings talking half his day, with no stutter- he never had therapy or anything for it either. My DH’s cousin on the spectrum didn’t speak for 7 years and now you can’t keep him quiet! He’s super academic also, like my husband. Even a severe speech delay does not necessarily mean a learning disability.

And my life is harder caring for them.

I can so understand that. I have a DH & DD with Hugh functioning autism and while I’d never want them to be anything other than who they are, my life is very affected and they rely on me a lot- which is hard for all of us because I have chronic illnesses so they can’t always rely on me! Argh! But the point is, that advocating for support for them in their communities should not be dismissed as unnecessary.

name one thing that you would lobby for

I already advocate for more funding to support diagnostic services and mental health care specifically targeted at people with autism. I have spoken to my MP but he was pretty uninterested tbh Those are my areas of concern, mostly centred around a basic lack of resources overall.

Please tell me what the Governess from The Chase has in common with my non verbal, severe learning disabled, 10 year old neighbour?
So many people assume that anyone who is non-verbal must have a learning disability. It's not the case. That 10 yr old may have the same intellectual capacity as the Governess, but no-one has been able to set up 2-way communication with that child.
Categorising autistic people is seriously flawed. I know a non-verbal autistic woman who needs full time care to keep her safe and manage personal needs. She is in the middle of a science degree. She is looking at a career in academia. What category would you put someone like that in?
There are a number of fascinating books written by non-verbal "severely" autistic people - you should read one, you would learn so much.

As for the blind analogy, we wouldn't be helping anyone if we grouped all blind and glasses wearing people together as sight impaired
The range of people included in the sight impaired definition is huge.
It includes people like me who is typing this message on a keyboard and can read the text on the screen, it also includes people who have no light perception. There is a clear definition, a criteria that needs to be met. If it is met, you are diagnosed. Very much like autism. There is so much variation in the type of support needed for sight loss or autism that it absolutely cannot be fitted into 2 or 3 categories. Everyone needs to be assessed individually.

Not sure if it was clarified or not but additional support in schools including in exams (eg separate rooms) do NOT require a diagnosis. The law is quite clear that this is based on need.

The Equality Act also does not offer automatic protection to people with autism; it offers protection to those with disabilities. Again this means a diagnosis is not required (but may make evidencing disability easier) and those who feel their autism does not constitute a disability may not be protected from disability discrimination.

I am absolutely certain this person does not have any form of autism. - @MorrisZapp

And I assume you are qualified to diagnose autism?

I know too many people (adults and children) with diagnoses who were initially told by doctors etc that they were not autistic. - @PinkSpiderplant

Absolutely!! We were told by a school psychologist that our dd wasn't autistic! Less than 6mths later ... ASD diagnosis!!

Simple things like schools allocating separate rooms at exam times because of sensory issues, can’t be offered without a diagnosis - @JessicaWakefieldSV

This isn’t correct. If you can demonstrate the need you can access this without dx - @Itwouldtakemuchmorethanthis

Not in my experience. Dd's school did nothing for her before her dx. She had the above mentioned psychologist for "anxiety" who was close to useless for her. But the school would not make any accommodations for her pre diagnosis, and her teacher labeled her "soft/whiny", when I tried to sort this out she lied to leadership team about what she had told me. Because dd had no formal diagnosis, I was dismissed as "that parent"

Education is heavily focused on “need” not “dx”. Accommodations are not dx based. - @Itwouldtakemuchmorethanthis.
Rather the this being the norm, I think you have been lucky with the school. Either way, when someone tells you of their experience, please listen and stop telling them they are wrong. That is their lived life. It is NOT up to you to say "you're wrong/you're doing it wrong"

How do you define "very disabled"? Genuine question.

@Birdsfoottrefoil - Not sure if it was clarified or not but additional support in schools including in exams (eg separate rooms) do NOT require a diagnosis. The law is quite clear that this is based on need

As maybe, but people on this thread have said that they get no support pre diagnosis, myself included. That is our reality!

I knew I'd get pulled up for that. No, of course I'm not qualified. I only have a laypersons understanding of autism, as does my relative.

This person has a lifelong history of self identifying as many, many things and having lived intimately with them for decades they do not tick any box whatsoever for the ASD traits I'm aware of.

She absolutely will not seek a diagnosis (or discuss with anyone who has a more objective view than her very closest relations) because she knows its unlikely she will be diagnosed with aspergers. I don't know if aspergers is still a recognised diagnosis anyway.

If you're thinking well no wonder she only tells her nearest and dearest because of shame and stigma, nope. She has actively sought out a number of stigmatised identities over the decades, and takes pride in loudly educating others about their prejudice.

We do have two people with diagnosed autism in our very close circle, and these people are completely open about their diagnosis. We don't have any friends or family who would stigmatise autism, quite the opposite.

By the way, I haven't told her I don't think she is autistic. I have smiled and nodded, as I have done since childhood.

According to a previous poster i have a lack of knowledge but to my mind it is other posters on here who seem to lack the knowledge. Many appear to be unaware of the existence of a large proportion of the autistic community i.e. those who would previously have been diagnosed with classical autism. The examples given for lobbying priorities are not at all beneficial for this group and are potentially harmful.

That 10 year old may have the same intellectual capabilities as the governess

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.

FreeTed appears to get that there is a distinction and please can I reiterate that I never denied that those who are intellictual more able also have difficulties but believe that those difficulties and needs are different. In much the same way that the needs of one group of visually impaired people may be glasses and another group may require assistance dogs.

I know there is no clear dividing line for ASDs just as there is not for visual impairments but thresholds are put in place for diagnostic purposes.

Anyway I'm not going to carry on disagreeing. Please continue to believe I have no idea although I bet I have met, lived and worked with more people on the spectrum than anyone else on this thread. That includes children and adults, with and without communication difficulties both HF and LF.

@differentnameforthis The statement
“Simple things like schools allocating separate rooms at exam times because of sensory issues, can’t be offered without a diagnosis -” is incorrect because it CAN be. Statements like this are what make it possible for schools to wriggle out of their responsibilities. I’m not stating that isn’t the posters experience. There are endless examples of schools attempting this shit along with ridiculous hurdles set up to for example stop people applying to be assessed for EHCP or being told LAs “never provide mileage you must use transport”.

As for how I would define “very disabled”, I’m not sure really. I know people who are very disabled by their autism and people who aren’t. All of them are autistic. We can’t ignore the fact that there are sections of the autistic community who have very limited life expectancy, or that some work, have families and freedom while others live in institutions or supported living and struggle with selfcare. How disabling your autism is isn’t an indication of how happy you are. We see this in the frightening suicide rates and MH problems that are so prevalent among even the most able.
So for me things like a life expectancy of 40ish, being unable to live without 1:1 support, struggling to be able to work access healthcare, or education, not being able to vote or have autonomy, are all very disabling. This is probably the case for over half the autistic population. Yet the voices on this thread and in support groups and seeking funding are not reflecting this.

10 years ago refusing intervention to “cure” your child of autism was seen as abhorrent. 10 years before that suggesting that autism was caused by “refrigerator mothers” was fairly common place. Maybe in 10 years time the autistic population will be mostly articulate independent autistic people. We need to be careful about what is happening to the original population, though.

It’s perfectly possible that my experience is not universal. There are lots of autistic adults on this thread, and lots with children in that population. I’m sure you go to support groups and see what opportunities are available in your area. Perhaps it’s just here that more severely impacted individuals are so invisible? Perhaps more than half of your groups are full of that section of the community? To be honest that would be absolutely fabulous to hear about.

I’m sorry if anyone felt “talked over”, I have a different view and I stopped posting for a bit yesterday in case I needed to leave more space for others to feel heard. Saying I wouldn’t advocate for one group doesn’t mean I don’t think others shouldn’t. It’s about what you feel is the most burning injustice surely?

So for me things like a life expectancy of 40ish, being unable to live without 1:1 support, struggling to be able to work access healthcare, or education, not being able to vote or have autonomy, are all very disabling. This is probably the case for over half the autistic population. Yet the voices on this thread and in support groups and seeking funding are not reflecting this.
10 years ago refusing intervention to “cure” your child of autism was seen as abhorrent. 10 years before that suggesting that autism was caused by “refrigerator mothers” was fairly common place. Maybe in 10 years time the autistic population will be mostly articulate independent autistic people. We need to be careful about what is happening to the original population, though.

What the fuck do you mean by ‘original population’ exactly? Your little list of what is ‘disabling’ shows your very limited experience and again you mistakenly believe that because an autistic person can type on a forum they are not truly representative of the ‘original’ or severely affected group. Honestly your contributions are an example of exactly what so many autistic people battle with, usually alone. I find it truly awful the assumptions and way you speak about autistic people.

I'm really pissed off with the attitude of people thinking that because Anne Hegerty is on telly she's fine and a bad autism ambassador. Prior to the tv work she struggled to hold down a job and had social services input due to executive functioning deficit.

Every member of my family is autistic. One has LDs as well. We all have equal challenges. Me and DH struggle with executive functioning yet we can parent. We absolutely can't cope in stressful situations though and I do get unable to speak.

Functioning labels are so ignorant and so damaging. Just because I can fake it for a short while at the cost of my mental health doesn't mean my diagnosis isn't valid or I'm a 'bad example' of an autistic person.

Functioning labels are so ignorant and so damaging. Just because I can fake it for a short while at the cost of my mental health doesn't mean my diagnosis isn't valid or I'm a 'bad example' of an autistic person

This ^ it’s really really awful to suggest it.

Oh and those of you saying that those of us who would have the 'high functioning' label in your eyes (functioning labels are prejudiced by the way) can fuck off with undermining my disability.