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

differentnameforthis I am in the UK and our experience with total lack of support for high functioning autism is the same. There is NOTHING and it took 5 flipping years to get a diagnosis, after languishing on the NHS despite a GP repeatedly asking for a referral, our school paid for a private assessment. We get nothing to help her severe anxiety, her extensive sensory problems or her mental health problems that have caused enormous difficulties and affected my life also. I am literally on my own. But I guess that doesn’t matter because I shouldn’t ask for help, even if she’s suicidal, in case it takes away from kids who are more severely affected- as was said earlier in this thread.

I'm damn sure an autistic lived experience far trumps yours if you're really going there.

I’m sure you go to support groups and see what opportunities are available in your area. No, because there aren't any where I live.

Perhaps it’s just here that more severely impacted individuals are so invisible They are not invisible here. We have a national disability scheme here (Australia) that gives those who are needing it a certain amount of funding per year to access services. The "severely impacted" (your words) get quite a bit, because their autism is tangible, and because they are non verbal/unable to do things independently/unlikely to live alone etc.

I fight each year for funding for my "HF" dd, reports, meetings, emails, letters, dr's letters because she is "HF" and I have to prove beyond a doubt that she is disadvantaged by her asd. They don't take into consideration her debilitating sensory issues that mean that she cannot dress herself without aid at 10 due to the way the clothing feels, or that she can only wear plain leggings and t-shirts in black and blue, or her debilitating anxiety, or the fact that she cannot sleep without meds, that she cannot tie shoe laces or use standard cutlery because her motor skills are lacking. They also don't care that she slams her head into walls when she is overwhelmed. Because you don't get funding for sleep/anxiety/sensory issues/self harm.

To be honest that would be absolutely fabulous to hear about. I'd be happy to tell you about it if they existed!

I am not trying to top trump you and my experience is as valid as any other posters

Nobody has said your experience isn’t valid, just that it is your personal experience and it is limited, therefore you should not have talked over others.

What about my comments on autism or autistic people is awful exactly? Only you’ve not specifically said at any point what I’ve got wrong or what I’ve said that’s ‘awful’ about autistic people. If you’re going to respond claiming that, you should highlight what it is. Otherwise I think you’re just deflecting. Several people have taken issue with your comments, not just me.

I find it truly awful the assumptions and way you speak about autistic people.
Yes I find your assumptions and understanding pretty awful too, but I am not trying to top trump you and my experience is as valid as any other posters.

As posted earlier “high functioning” means an IQ over 70. So, it is NOTHING to do with “how well you pass for NT” or “how little your disability impacts others”. I haven’t stated I am nt, or that I am autistic. I haven’t shared the profile of any of my family members. I have a fair amount of experience of autism, but even if I had none at all I would imagine it would be ok for me to say “I worry about this group of disabled people, and the impact of dsmv on them and the impact of self ID on them”.

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.

It's not a bloody competition!! For Christ's sake!!

I get living with others' autism can be difficult (hell the five of us trigger each other every day) and yes it's hard - I think I found the kids' early years hard because of my own autism too..

It doesn't give you a right to shout down the lived experience of autistics no matter how you diminish their disability.

I have two female friends. Mothers both diagnosed, all their children diagnosed. They definitely are too but can't get that because there isn't currently an adult diagnosis service in our area. The clinician left.

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.

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.

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.

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.

@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?

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.

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.

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.

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!

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.

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.

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.

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.

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.

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.

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.