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

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

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.

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.

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!

• through not though

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....

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

I'm surprised anyone thinks diagnosis is a bad idea for adults or children. Knowing that there's a reason why you struggle with a particular issue rather than just not trying hard enough is very liberating

Yes they both have a diagnosis of this word in common but the word means different things to each of them. The LD and lack of verbal skills are not in addition to my neighbours autism, they are part of his autism.

And, so what? No two autistic people are alike, they'll all be affected by their autism in ways that are unique to them, but they all have difficulties in the triad of impairments, that's what they have in common.
And you're wrong by the way, both in this post and your earlier one, and learning disability is not and never was a requirement for a diagnosis of classic autism (Also known as Kanner's autism). Being non-verbal is part of that person's autism, their learning disabilty is in addition to it.

Speech delay is what separated what the DSM called "Autistic Disorder" (also known as Kanner's autism or classic autism) from Aspergers Syndrome. If a person had an IQ over 70 and no clinically significant speech delay (as in they spoke before three) they would have been diagnosed with Aspergers. But if a person had an IQ over 70 and delayed speech, they would be diagnosed with autism.
A learning disability has never been a requirement for a diagnosis of Kanner's autism.
In fact when the criteria was first drawn up by Kanner they excluded individuals with a learning disability (and those with epilepsy) because they wrongly believed such conditions could not co-exist.

'Opposing views' thingybob? I think you mean 'ill-informed views'.

Yes they both have a diagnosis of this word in common but the word means different things to each of them. The LD and lack of verbal skills are not in addition to my neighbours autism, they are part of his autism. I don't want to get into a heavy debate but tbh the shouting down of opposing views on this thread remind me of another group that are often discussed in Women's Rights.

Please tell me what the Governess from The Chase has in common with my non verbal, severe learning disabled, 10 year old neighbour?

What they have in common is that they are both autistic. What they do not have in common is that one of them has a learning disability and doesn't speak and the other doesn't have a LD and does speak... So, yes, they have autism in common. There, it's not that hard, is it?

It is vital that services ensure that no one 'falls between the cracks' so they may receive the support and/or treatment necessary to help them lead the most fulfilling lives they are able.

Self ID of ADD and ADHD is definitely an issue - ADD and ADHD present very similar symptoms to ASD and ASD ADHD and ADD share some behaviors with OCD.

Kids are being prescribed Adderall for ADD and ADHD and the like by HCPs without MRI tests/review and with only mental health assessment or self-report of symptoms they've read online (sound familiar?). This is why so many college kids are now hooked on Adderall in the US (and I think is one of the reasons some if this SJW stuff has gotten out-of-hand).

ASD, OCD, ADD, and ADHD have overlapping behaviors and may be comorbid and while symptoms differ they have been found to have significant overlap - so how is it possible that a lay person could properly self-diagnose any of the aforementioned?

JessicaWakefieldSV completely agree!

Itwouldtakemuchmorethanthis I work with young autistic adults in a residential setting, most of whom are non verbal and have significant learning difficulties. I have spent the last 12 years researching autism, in all its forms, in order to get my children the support and access to services they need. Because of ignorance, I've had to.

Whataboutery is a tactic used when someone knows they've lost an argument.

You repeatedly talk about people silencing autistic people. YOU are doing it, you as a NT person, are doing it on this thread to autistic people.

You know what it is to be an advocate, but you have no right to dismiss the views and experiences of autistic people that don't fit with your very limited experience.

Sooner you learn that the better.

Does it not worry you at all, how invisible the majority of autistics are in their own groups?

Yes. That’s not what we were discussing though, it’s whataboutery. We were discussing self id, and with that all the undiagnosed adults and girls who in particular struggle with underfunding meaning lack of qualified assessments, and how we were advocating and campaigning for them to be better cared for. You then went onto your issues with advocating for them because it would mean, in your eyes, less for your child who you believe deserves more. Not that anyone suggested taking anything from anyone else. You might like to take a moment, because those with autism speaking on this thread have definitely been talked over by you. Here. On this thread. Maybe less pushy parents and more opportunity for people with autism to speak for themselves, if they can, would be a good thing. What should never happen, is autistic parents telling those with autism who are verbal and articulate, that they should sit down because non verbal or physically impaired autistic people are more important. That is shameful behaviour.

Over half of the autistic population have learning disabilities. A large proportion of the autistic population are non verbal. Does it not worry you at all, how invisible the majority of autistics are in their own groups?

My concern is for those that are very disabled by their autism

How do you know who is and isn't? What qualifies you to decide?

I think it’s you that isn’t listening

It's not, believe me it's not. It is you, who is so determined that you and your NT way is the only way because you've decided it is.

You have no idea what anyone else feels or needs because you're so busy shouting them down you're not listening.

You may class that as an advocate, I'd be more inclined to label it as an oppressor.

I think it’s you that isn’t listening. I too have a child who needs a superate room for exams and got it without dx. So while it might be true in your dcs case it isn’t policy. Education is heavily focused on “need” not “dx”. Accommodations are not dx based.

Your initial response told me I was wrong and it wasn’t how it worked. That is what you said. It is the polar opposite to what we have been told at more than one school, and again by a head of pastoral care when it came to school policy. I have heard this repeated by other parents. Otherwise why the fuck would anyone bother with the horrible assessment process?

Your contributions here have been read and I’m not the only one who has taken them this way, others are responding to you too. Maybe reread your own words and ask yourself why others on this thread are so pissed off. You again say ‘ my concern is for those very disabled’, something you cannot determine by sight alone, nor can you say that someone who is articulate is less affected- as you did earlier. You questioned how someone’s life is ‘greatly affected’ complete with insulting rude emoji.

I didn’t say more effected than everyone in the entire world I said usually we are. It’s a fact.

I think it’s you that isn’t listening. I too have a child who needs a superate room for exams and got it without dx. So while it might be true in your dcs case it isn’t policy. Education is heavily focused on “need” not “dx”. Accommodations are not dx based.

My concern is for those that are very disabled by their autism. I see them repeatedly sidelined and I think everyone should be worried about that and I think it’s fine to say that’s where my energies focus and that that’s where I think funding should be focused. There isn’t an unlimited pot. It is important how we treat our most vulnerable, and it’s fine to say you think they are being lost.

Oh and you cannot access specific help designed under the Equalities Act without a diagnosis. It's why my children are diagnosed!

Itwouldtakemuchmorethanthis having RTFT, you are one of the people who spend their time shouting down anyone else because you feel your opinion is the only valid one.

It's not.

And your comment questioning how severely impacted an autistic person might be complete with sarky emoji was exactly the kind of shit that I am fed up dealing with.

You can comment on your own experience, but you have no fucking right to put down the experiences of others.

For the record, I'm diagnosed and so are my 3 children. I could explain how it affects us, in vastly different ways,but I'll be fucked if I'll justify myself to you.