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.

Someone very close to me has self diagnosed herself with aspergers in late middle age.

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

I'm torn on the diagnosis thing. My close relative has not sought a diagnosis, I think because she would be politely told she is not autistic.

But at the same time, adult diagnosis is clearly vital to many, particularly as so little was known say, twenty or thirty years ago.

I'm sad to say I take no issue with the op, there definitely is such a thing as a weekend autistic. I know one.

What was actually said

*PinkSpiderplant

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.

*Itwouldtakemuchmorethanthis

hmm so basically focus resources (time/money) on the able articulate possibly autistic adults to make sure they are well catered for and then perhaps anything that you have left can be used for the autistics. Why?

Yes I know that. I’m not claiming anything you didn’t say yourself. You are complaining about others campaigning or advocating for better resources for people with autism who are undiagnosed incase that takes away resources for those you think deserve them more. It’s not an either or situation. Those undiagnosed who are autistic, can’t even explain to others things about themselves without a diagnosis. It makes everything so much harder without one, nevermind them getting on to support that they might need. Simple things like schools allocating separate rooms at exam times because of sensory issues, can’t be offered without a diagnosis. At work, for adults, you can’t ask your boss for understanding if you can’t name why you behave differently and need support/awareness/understanding. You think because someone can go to school or work, that they shouldn’t get help because resources are scarce and people like your child deserve it more- you literally said so earlier. I think that is so uncaring and lacks a basic understanding of autism. The point we were making earlier is that services need to improve so that obtaining a diagnosis either in childhood or as an adult, is not so difficult. Then we wouldn’t have an issue with people self IDing, as it would not be necessary for anyone and those taking the piss would be rightly told to stop.

Well put jessica completely agree.

morriszap you might be right about your relative, but I know too many people (adults and children) with diagnoses who were initially told by doctors etc that they were not autistic. The range of presentations is wide and it can be missed by professionals who aren't adequately trained/experienced.

Simple things like schools allocating separate rooms at exam times because of sensory issues, can’t be offered without a diagnosis.. This isn’t correct. If you can demonstrate the need you can access this without dx.

To be clear my dc doesn’t have LFA, I said he was usually the most severely effected in the room. that’s not the same thing.

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

Yes it is, we’ve been in this position. You really enjoy talking over others don’t you? This is literally what schools have told us.

You have no idea if your child is the ‘most severely affected in the room’ as you don’t know the other people or their lives. You know your child. That’s it. You think this makes you an expert and someone who can decide who is more affected, who should get limited resources instead of campaigning for more. It doesn’t. It makes you an expert in your child and how autism affects them. You have no idea of the lives of others with autism or what their life is like. Stop assuming things based on your limited experience and listen. I would never get on a thread and insist my child is more affected than anyone else. It’s a meaningless phrase in any case.

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

Yes me too. There’s a really good YouTube channel of a young woman with autism who had seen several therapists before being diagnosed, she’s very clearly autistic to anyone with any remote idea and when she talks about her life it’s sad how unnecessarily hard it’s been because of the lack of a diagnosis earlier. Our own DD has had serious and frightening mental health episodes from the lack of diagnosis and support. It builds up over the years and affects every aspect of all our lives.

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.

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

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.

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.

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.

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?

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.

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.

JessicaWakefieldSV completely agree!

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?

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?

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.

'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.

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.

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