How common is ASD

[glowyjuice]

Hi I'm posting this as just to see what other peoples opinions are, I've read that about 1% of people have a diagnosis of ASD, I'm wondering do you think taking into account those who are undiagnosed would this figure be much higher? I do sometimes wonder how many undiagnosed adults or even children there are out there.

If a MN posts mention ND I will reply and often mention our conditions but I won't actively seek out ND posts. It is nice when they pop up though, as it makes me feel less alone dealing with ND things.

My eldest daughter got a dyspraxia diagnosis at 7. It wasn't until she was 22 that she got her autism diagnosis. Her university disability team suspected it and suggested further testing, but it took 2.5 years on the nhs waiting list to confirm. The ASD diagnosis team were shocked it hadn't been picked up in childhood but they said that is often the case for girls. Our other children have ND diagnosed conditions too.

@budgun

There is a big difference between an adult with an autism dx who is able to marry, work, contemplate how their autism impacts them to someone who has little communication, can't live alone, no sense of danger etc. Recognising this difference helps with identity and with communicating needs and disability.

I don't think you can know how substantial any differences will be when the autistic child becomes and adult though.

My DS was all of the things you describe as a child, up until about age 12 where he started to develop into the 18 year old he is today. About to go to uni (albeit living at home). So putting him into the box as a child would have been damaging to him as an adult.

I'm in my 40s and still have moments where I can't talk. Sometimes I need to process what is happening and how to respond and it leaves me unable to talk. Usually when I am out and my day is thrown into chaos (think cancelled train/error at appointments etc)

Well for some people you can my eleven year old has severe autism and learning disabilities he is non verbal he wont be going to university as he, s still working at pre school levels he has always been at a special school, there are an awful lot of children at special school, s with a diagnosis of autism.

Well for some people you can my eleven year old has severe autism and learning disabilities he is non verbal he wont be going to university as he, s still working at pre school levels he has always been at a special school, there are an awful lot of children at special school, s with a diagnosis of autism.

It's the learning disabilities that are key here though, the discussions re separating the autism diagnoses again are for autism only. Any additional conditions obviously change things.

I'm not saying all autistic people are the same, I'm just saying that a over the course of a lifetime they are affected in different ways so placing someone into box A/B/C as a child isn't particularly helpful.

@budgun

Well for some people you can my eleven year old has severe autism and learning disabilities he is non verbal he wont be going to university as he, s still working at pre school levels he has always been at a special school, there are an awful lot of children at special school, s with a diagnosis of autism.

It's the learning disabilities that are key here though, the discussions re separating the autism diagnoses again are for autism only. Any additional conditions obviously change things.

I'm not saying all autistic people are the same, I'm just saying that a over the course of a lifetime they are affected in different ways so placing someone into box A/B/C as a child isn't particularly helpful.

The point that I made though is that previously if you told someone that somebody had autism it was generally understood to be more profound as that is what the dx was, classical autism. Now the dx has been opened to the "full spectrum" so the autism dx is meaningless to those with the most profound needs.

The widening of the spectrum has created more diagnoses, as it includes those whose autism has less impact. This is in response to the op's question.

My son has recently had an independent EP assessment (AR for transition) he has categorically ruled out learning disability although acknowledges some learning difficulties, however my son will never live alone or go to university etc. He has severe autism.

Autism is a disability and is very profound in some cases. Having your son and my described by the same dx isnt helpful to either but probably more so to my son as he isn't able to advocate for himself or campaign for the change whereas high functioning (for want of a better term) are.

As an aside lack of communication ability all the time is also very different to periodically being unable to speak. The two aren't comparable. (In response to your previous post).

I personally agree that we could do with more delineation. After all, we like categorising things, and it feels like we could come up with a series of autism profiles if we all clubbed together and really thought it through.

I guess the problem is that there'd be some rules that came out of it, like "only autism categories 1-3 warrantee levels of support". People would quarrel over faulty labels or which one they belonged to ("I'm a level 3 at this and level 12 at that.")...

Huge can of worms I suppose.

Ds has severe autism and a severe learning disability. The severity of the autism was obvious very early on. The extent of his learning disability came later.

Autism is a disability and is very profound in some cases. Having your son and my described by the same dx isnt helpful to either but probably more so to my son as he isn't able to advocate for himself or campaign for the change whereas high functioning (for want of a better term) are.

But my son would have been diagnosed the same as yours. We had no idea that university was a possibility for DS when he was younger. We thought we were looking at a very bleak future for him if I'm perfectly honest. I still think it's unlikely that he will ever live alone, he still needs an awful lot of support, but he is a different person to the boy who was diagnosed.

As an aside lack of communication ability all the time is also very different to periodically being unable to speak. The two aren't comparable. (In response to your previous post).

I wasn't trying to compare these 2 things. I was (badly) trying to demonstrate that despite being a functioning adult, sometimes I can't function. Sometimes I am affected differently.

I think the main issue is that people see the autistic spectrum as linear with "low functioning " at one end and "high functioning " at the other.

In reality it's a wheel and there are difficulties (and sometimes strengths) in every area to various degrees.

The way I try to explain to some children I work with (apologies if it's dumb or trivial, but it seems to work) is to think of autism as a pizza cut into slices. Each slice is different, some slices (or even the whole pizza) might have more ingredients (so much so that it crumbles and falls under the weight) some might have less. It's still a pizza. It's still autism.Some slices might have their favourite topping which is great(strengths) some might have no nice toppings or even things they actually dislike(difficulties). It's still a pizza. It's still autism. Most pizzas will look entirely different to each other . It's still pizza. It's still autism.some people might say it's not even a pizza because it doesn't have tomato sauce or cheese. But it's still a pizza. It's still autism.

I hope I don't offend or upset anyone with this.

@budgun

Autism is a disability and is very profound in some cases. Having your son and my described by the same dx isnt helpful to either but probably more so to my son as he isn't able to advocate for himself or campaign for the change whereas high functioning (for want of a better term) are.

But my son would have been diagnosed the same as yours. We had no idea that university was a possibility for DS when he was younger. We thought we were looking at a very bleak future for him if I'm perfectly honest. I still think it's unlikely that he will ever live alone, he still needs an awful lot of support, but he is a different person to the boy who was diagnosed.

As an aside lack of communication ability all the time is also very different to periodically being unable to speak. The two aren't comparable. (In response to your previous post).

I wasn't trying to compare these 2 things. I was (badly) trying to demonstrate that despite being a functioning adult, sometimes I can't function. Sometimes I am affected differently.

Sorry I can get very defensive, as you'll be aware it's a never ending battle.

I agree completely about different functioning and people who can function sometimes not at others. I think this needs recognising also and where needed (not saying in your case, you haven't implied, just for some others) support given.

I think it's amazing that your son is at university, I'm sure you've all put alot into getting there and had a fair few battles along the way.

I would imagine tho that your case is the exception rather than the norm and if your son doesn't fall into the severe "box" you'd be able to change it as it seems quite obvious he isn't (even with all the support). If your son is at uni now would he not have got an autism dx initially? Was aspergers still diagnosed when he was assessed? If so the autism dx will still stand it's just the meaning of the dx has now changed to include hf /aspergers etc so your son is covered by the dx.

Children diagnosed early especially those with regression usually (not in your case) are profound. My son was picked up at his 1 year hv check, which was slightly delayed by a couple of months. He was just over two when he got his dx. There was no question. These are the people who need that separate dx. While it may not help your child, I can only advocate for mine and this would help him. Your son and mine are different. I can't help but want his dx to reflect this.

@obviousNameChange

The point with severe autism is that some people (not just children) have severe needs in every aspect. Hence severe. Their strengths aren't things that you would expect and are relative to their other also serve needs.

I dont see autism as linear but I do acknowledge that autism isn't autism some people are more affected.

Thank you for the link @BlankTimes. I did the test and scored 14. I will ask DH to do the test. I suspect that his score will be muvh higher.

I'm also going to guess the children you're explaining it too aren't severe. Given that you are explaining it, using metaphors etc

If your son is at uni now would he not have got an autism dx initially? Was aspergers still diagnosed when he was assessed? If so the autism dx will still stand it's just the meaning of the dx has now changed to include hf /aspergers etc so your son is covered by the dx.

He starts this year, he is 18 now.

His diagnosis was ASD, they had just changed a few months beforehand and told me he previously would have received a diagnosis of 'classic autism' - initially he had been referred by a paediatric to CAMHS for 'query aspergers'

It's tricky. I would not want to minimise anyone's diagnosis, but as I have always said when asked how 'severe' my DCs autism is 'it depends what you are asking them to do'

Separately diagnosing I feel could be harmful for those like DS, who is very different to the child who was diagnosed. No matter what anyone says there would always be an extra hurdle to jump if the diagnosis were split. I find people talk to me as if I'm stupid sometimes if I disclose my autism on first meeting - imagine having a diagnosis as a child that didn't quite for as an adult, and having to convince people that you are capable. I do agree though it is arguable more harmful for those who are much more severely affected to lump everyone together.

I'm sure there is an answer somewhere.

Children diagnosed early especially those with regression usually (not in your case) are profound. My son was picked up at his 1 year hv check, which was slightly delayed by a couple of months. He was just over two when he got his dx. There was no question. These are the people who need that separate dx. While it may not help your child, I can only advocate for mine and this would help him. Your son and mine are different. I can't help but want his dx to reflect this.

The HV clocked it at his 2 year check. He was referred to community paeds and eventually went through CAMHS -

@budgun can I ask what the signs were at his 2 year check? I have a child I suspect may be on the spectrum but the HV here is still refusing to see people face to face and his 2 year check was done over the phone. It’s difficult to describe the issues over the phone.

@Justrealised

I'm also going to guess the children you're explaining it too aren't severe. Given that you are explaining it, using metaphors etc

I apologise, yes you're right.

And I completely understand that the main focus for you is your child and advocating for his needs , making sure they are recognised,acknowledged and hopefully catered to and supported, especially once you won't be able to anymore.

@budgun

If your son is at uni now would he not have got an autism dx initially? Was aspergers still diagnosed when he was assessed? If so the autism dx will still stand it's just the meaning of the dx has now changed to include hf /aspergers etc so your son is covered by the dx.

He starts this year, he is 18 now.

His diagnosis was ASD, they had just changed a few months beforehand and told me he previously would have received a diagnosis of 'classic autism' - initially he had been referred by a paediatric to CAMHS for 'query aspergers'

It's tricky. I would not want to minimise anyone's diagnosis, but as I have always said when asked how 'severe' my DCs autism is 'it depends what you are asking them to do'

Separately diagnosing I feel could be harmful for those like DS, who is very different to the child who was diagnosed. No matter what anyone says there would always be an extra hurdle to jump if the diagnosis were split. I find people talk to me as if I'm stupid sometimes if I disclose my autism on first meeting - imagine having a diagnosis as a child that didn't quite for as an adult, and having to convince people that you are capable. I do agree though it is arguable more harmful for those who are much more severely affected to lump everyone together.

I'm sure there is an answer somewhere.

i realise that some people with autism they can have spikey profiles and do badly in some areas and well in others, But for many people who are severley impacted by autism they are impacted in all area, s I think in America they have different levels of autism to differentiate how impacted people are

Well in my sons class of 30, I know of 3 that have an Autism diagnosis including my DS. Just finished Y5 in a state school.

I work at the same school and I would say there is 1-2 children with ASD in every class, although not all have a diagnosis.

@ObviousNameChage

I think the main issue is that people see the autistic spectrum as linear with "low functioning " at one end and "high functioning " at the other.

In reality it's a wheel and there are difficulties (and sometimes strengths) in every area to various degrees.

The way I try to explain to some children I work with (apologies if it's dumb or trivial, but it seems to work) is to think of autism as a pizza cut into slices. Each slice is different, some slices (or even the whole pizza) might have more ingredients (so much so that it crumbles and falls under the weight) some might have less. It's still a pizza. It's still autism.Some slices might have their favourite topping which is great(strengths) some might have no nice toppings or even things they actually dislike(difficulties). It's still a pizza. It's still autism. Most pizzas will look entirely different to each other . It's still pizza. It's still autism.some people might say it's not even a pizza because it doesn't have tomato sauce or cheese. But it's still a pizza. It's still autism.

I hope I don't offend or upset anyone with this.

You see thst would mean nothing to my son, he has no clue he is autistic, hes eleven non verbal etc he, s not a clue, he communicates on a very basic level using PECs and objects of reference

[quote Neverrains]@budgun can I ask what the signs were at his 2 year check? I have a child I suspect may be on the spectrum but the HV here is still refusing to see people face to face and his 2 year check was done over the phone. It’s difficult to describe the issues over the phone.[/quote]

I wasn't tuned in at all to it being potential autism and she never said outright. I had very little knowledge of autism, I had seen a documentary in the 90s and that was about it. I didn't suspect it and I didn't realise his behaviours were not quite 'standard' so I had no input at all. HV just observed him - it was home visits they did back then here and she asked the questions on her form. She was surprised at his ability to use a mechanical toy which was beyond his years. I only brought it out to try and keep him still because he never actually played with toys, but this was something new I had thought I could use to get through the visit. Turned out it added to the questions raised. I cant even remember how we got from HV to paeds, I guess she must have told me then she was going to recommend referral?

@ObviousNameChange, I'm going to take that last comment as an accidental faux pas rather than jab or even a threat.

Carly Fleischmann is non-verbal but has a much better understanding of pragmatic language and social awareness than I do. In this interview with Channing Tatum she is flirting, joking, is able to take turns etc etc. I struggle with those things a lot.

Being non-verbal doesn’t always mean you’ll never do anything with your life and being verbal doesn’t always mean the world is all rainbows and sparkles and you can do anything. Yes, in some cases the person is significantly affected in all areas of the spectrum and will need level 3 support for everything. In other cases they may only need level 1 support in some areas but level 2 in others.

I have been assessed as needing level 1 support so would be labelled “high functioning“, which is fine but also irritating because then I’m labelled as not being ‘that bad’, just a ‘bit quirky‘, only have it ‘mildly’, which is not the case at all. I’m not going to detail my issues/struggles here as I don’t believe there’s much point and it would turn into a race to the bottom with some people.

I can’t understand what it’s like to be Carly or someone else who is significantly affected in all areas but I wish people wouldn’t presume they understand what it’s like to be me either and that I can’t possibly have it as bad just because I can talk. Advocating for someone doesn’t have to be at the expense of others, which is sometimes how it seems on here.

I don’t like the linear or gradient spectrum that people refer to because it pigeon holes everybody on the spectrum into one box that they’re not allowed to get out of. It’s not a gradient at all. It’s not less autistic to most autistic. It’s not mild to severe. Carly is no more disabled than I am and vice versa but people would presume very different things about us.

I am also another professionally diagnosed person that is irritated by the whole self-identification/self diagnosis nonsense. You cannot call yourself autistic unless you have a formal diagnosis. It’s akin to going around telling people you have cancer when you don’t. It’s a lie.

I am also another professionally diagnosed person that is irritated by the whole self-identification/self diagnosis nonsense. You cannot call yourself autistic unless you have a formal diagnosis.

Urgh. These Facebook groups are full of it. Self IDing as autistic

Literally fuck off.

@SwimmyG

Carly Fleischmann is non-verbal but has a much better understanding of pragmatic language and social awareness than I do. In this interview with Channing Tatum she is flirting, joking, is able to take turns etc etc. I struggle with those things a lot.

Being non-verbal doesn’t always mean you’ll never do anything with your life and being verbal doesn’t always mean the world is all rainbows and sparkles and you can do anything. Yes, in some cases the person is significantly affected in all areas of the spectrum and will need level 3 support for everything. In other cases they may only need level 1 support in some areas but level 2 in others.

I have been assessed as needing level 1 support so would be labelled “high functioning“, which is fine but also irritating because then I’m labelled as not being ‘that bad’, just a ‘bit quirky‘, only have it ‘mildly’, which is not the case at all. I’m not going to detail my issues/struggles here as I don’t believe there’s much point and it would turn into a race to the bottom with some people.

I can’t understand what it’s like to be Carly or someone else who is significantly affected in all areas but I wish people wouldn’t presume they understand what it’s like to be me either and that I can’t possibly have it as bad just because I can talk. Advocating for someone doesn’t have to be at the expense of others, which is sometimes how it seems on here.

I don’t like the linear or gradient spectrum that people refer to because it pigeon holes everybody on the spectrum into one box that they’re not allowed to get out of. It’s not a gradient at all. It’s not less autistic to most autistic. It’s not mild to severe. Carly is no more disabled than I am and vice versa but people would presume very different things about us.

I am also another professionally diagnosed person that is irritated by the whole self-identification/self diagnosis nonsense. You cannot call yourself autistic unless you have a formal diagnosis. It’s akin to going around telling people you have cancer when you don’t. It’s a lie.

Yep i totally agree with you on the self diagnosis, comment if you have autism you have autism, but to say you have when you havent had a diagnosis and then try and shout down struggling parents (seen this on many facebook groups is so wrong)

[quote Justrealised]@ObviousNameChange, I'm going to take that last comment as an accidental faux pas rather than jab or even a threat. [/quote]
Once again I apologise and I'll bow out of this thread since what I'm trying to say and how it actually reads is miles apart and upsetting.