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To think that only middle class children/adults , suffering from high functioning autism are getting any help.g Autism

72 replies

sunshield · 16/07/2015 15:41

I watched " Girls with Autism" last night on ITV , and what became clear was how middle class the girls were at the high functioning specialist school.
This tallies with my own experience of attending adult support groups for autism. This is dreadful because it seems that either high functioning autism is linked to high achieving or "prosperous" , or more likely not picked up with children/adults from more disadvantaged circumstances. This means that those not getting any help, are liable to end up in jail or on the street The diagnosing of HFA tends to be linked supportive families, therefore how many people needing help get none.

I was diagnosed two years ago at the age 38 mostly to access support for Open University studies. My mum always knew i was different from my two sisters, but did not want me "labelled" therefore did not seek a diagnosis for me.

OP posts:

AnyoneForTennis · 16/07/2015 15:47

I think it gets 'picked up on' in school more so now?


AnyoneForTennis · 16/07/2015 15:49

I watched that programme too

I couldn't help but wonder what happens next for those girls? Once school is finished then What?


Aeroflotgirl · 16/07/2015 15:49

Mabey social class has bearing how parents aporoach Autism, mabey those in the middle classes, research around the subject and read up about it, join groups and are more aware of what they are entitled to. they are more likely to afford legal representation in apoealling LEA decisions to get the provision they need for their child.


Aeroflotgirl · 16/07/2015 15:55

For dd it's also about luck, her headteacher at her old infant mainstream school had a dd with Autism, she was very clued up, and put dd needs first to apply for proper provision and funding for dd to help her. When that was not working talked about the other options available. She suppirted dd application to a state run Autistic School where dd is now and flourishing. Not all schools are as supportive or informed.


GoodbyeToAllOfThat · 16/07/2015 15:57

I don't think it's any different than any other diagnosis, middle-class parents aren't shy about agitating on behalf of their children.


helenahandbag · 16/07/2015 16:04

I'm 25 and now pursuing an AS diagnosis. My mum said I was "odd" as a child and things were certainly picked up on in my nursery reviews but nobody put two and two together. Apparently I wasn't interested in playing with other children, very focused on the things I liked and "had difficulty telling the difference between reality and my own imagination". I've always been terrified and overwhelmed in noisy or busy situations.

My much younger brother went through rigorous testing for ADHD several years later though, nice to know that my issues were missed but his weren't.


FaffingtonBear · 16/07/2015 16:17

My daughter attends a mainstream school but has just been diagnosed HFA, her school have been nothing short of fantastic, we have engaged a private SALT for her though as the NHS ones are so short staffed and stretched we felt it wasn't enough and I've done lots and lots and lots (!) of reading, research and looked for areas for support for her.

I wouldn't say I'm middle class (what's class got to do with it anyway ? Confused ) but just a normal concerned parent who wants the best for their child ! So I'm doing the research and asking the questions probably being a PITA to the school SENCO and LEA to find out if there is anything else I can do.

I possibly am on the spectrum as well (my world is very black and white) but I'm not looking for a diagnosis as it wouldn't enhance my life or harm it in any way.


OneInEight · 16/07/2015 17:37

I certainly know of many children in our LEA who live in less well off areas who have a diagnosis and are statemented so it is not always the case. If I am honest my grant-writing experience probably speeded up the SA application process for my ds's but no matter how well organised or eloquent the application it would not have worked if they didn't have high need.

In other areas e.g. getting respite from social services it is probably a disadvantage to live in a nice area. Certainly, we seem to be in a black hole with respect to this provision. As far as we know the ds's are still on social services books but they haven't made contact for over a year. One social worker sat in my sitting room, looked at me bemusedly and said well we don't get many families like yours on our books. He was on the disability team so clearly they think that middle class children do not have disabilities which is quite frankly rubbish.


Athenaviolet · 16/07/2015 17:43

Well the school was in Surrey.

It's quite common for lots of conditions to be diagnosed earlier if they have the stereotypical pushy mc parent. Kids of poor/uneducated parents are more likely to just be labelled 'naughty'. Lots of people haven't even heard of aspergers/hfa etc.


EstaRive · 16/07/2015 17:51

From my experience as a parent of a child with autism, I think educated, professional parents are often better able to navigate the system and push for the support their child needs, which of course creates an inequality.

When I think of all that I have had to do to:

a) get a diagnosis for my child
b) get a Statement for my child
c) get the right type and level of support needed written into his Statement
d) get the right school place for him

...I feel very angry that if I were not educated, not confident in dealing with professionals, didn't have a supportive partner and other family support to keep me sane, if English was not my first language...I would probably not have got any of this support for DS. And then where would he be?


PtolemysNeedle · 16/07/2015 17:53

You might have a point when it comes to adults, but I don't think you're right to apply it to children. Children get support from schools whatever class they come from, and maybe middle class parents seek out more support or engage more fully with the support, but there's nothing stopping anyone else doing the same.


plainholly · 16/07/2015 17:55

My DS goes to a similar school (but mixed) and the majority of parents have had to appeal to get their child a place there - the placements are eye wateringly expensive so councils usually refuse. And to go to appeal usually means paying for independent assessments (from educational psychologists and speech & language therapists), and you need to be confident in dealing with the paperwork and legal arguments - many parents pay for an advocate or solicitor.

So yes, most of the students at DS's school come from middle class/wealthier families. I'm not one of them - we got full legal aid as I'm a single mum on benefits, which paid for assessments and a solicitor. I know a few other parents at his school are in the same position, but most of them are quite well off. And there are a few who got the placement with full agreement from their council, but only because their cases were severe (but high functioning) and every other option had been exhausted.


pinkstrawberries · 16/07/2015 17:55

You are right op. It isn't fair


pinkstrawberries · 16/07/2015 17:58

There is a lot stopping some parents accessing support ptolemy. They might not be able to read, write. They don't know about different conditions or have the ability to research. As a poster above said they are more likely to be viewed as 'naughty'. They might have undiagnosed learning disabilities themselves


enderwoman · 16/07/2015 17:59

Considering how hard it is to get a diagnosis, I'm not surprised that it is pushier/more educated parents with an ability to pay to speed up the process who secure help earlier.


vonny63 · 16/07/2015 18:15

Totally agree.
My son has HFA and goes to a specialist provision. I'm not middle class but am educated and learnt very quickly how to navigate the system. I refuse to back down when faced with a room full of professionals. I sought legal advice and it was a tough slog. His placement is ridiculously expensive but I could see how another parent could easily become overwhelmed. His place is fully funded by the LEA. I did alot of the leg work myself researching and visiting various schools. It went to multiple panels.
But if you don't have the education as the parent how can you access the same for your child?


sunshield · 16/07/2015 18:16

My mum knew i was different from my sisters, but going back 25-30 years ago nobody understood what HFA was. This meant if mum would have pushed for a diagnosis of sort, eventually the wrong diagnosis would have been given . This could have led to a place at the 'wrong' type of special school , such was the ignorance of the condition. However, by going to a mainstream school i was able to achieve 2 Cs in Maths/English and 3 D grades in other subjects.

The fact is i was very lucky to have had an educated mum (English teacher, and a highly respected Accountant father) who was able to find work for me running the properties he owns. There are startling facts coming out about the prison population , showing very high numbers of prisoners suffering from Autism Dyslexia, Dyspraxia / Aspergers . These prisoners are liable to be there as a result of their Autism and because of no support from family or school.

OP posts:

PandasRock · 16/07/2015 18:23

Another thing to do consider is that, especially where HFA or AS is concerned, often the only way to even get a diagnosis for younger girls is to go private. There is no way my dd2 would have been diagnosed as early as she was on the nhs (she was dx'd at 7, so not exactly tiny).

My ds (3) is currently in the system, being assessed. At his last appointment, his Paed agreed with me that there is no way he would even be in the system if he didn't a) have 2 older sisters with ASD (one severe, one HFA) and a switched-on, educated parent who had negotiated the system before (read 'pushy, middle classed parent' if you so wish). He has needs, but they are mild. He would be nowhere near the top,of anyone's lost without the family history or my 'pushiness'.

Basically, our whole dx system in this country is woeful at best, and designed to keep children from being 'labelled' for as long as possible. Of course, this comes with the bonus that there are no extra costs associated with an 'unlabelled' child Hmm. It's the pushy, middle class parents who don't stand for that kind of bullshit, ime. Which is why you see the imbalance that you do.

And agree with 'e school is in Surrey' as a reason, wrt that documentary. It is in a particularly leafy, commuter belt part of Surrey. There is nothing but pushy, middle class parents for miles around.


BackforGood · 16/07/2015 18:41

I've not seen the programme yet, but in answer to your question, I'd say No.
It certainly doesn't happen in schools or EYs teams I've worked in. We support a huge number of families who certainly wouldn't be called middle class.
I agree with Aeroflotgirl though that Mabey social class has bearing how parents aporoach Autism, mabey those in the middle classes, research around the subject and read up about it, join groups and are more aware of what they are entitled to. they are more likely to afford legal representation in apoealling LEA decisions to get the provision they need for their child

but that certainly doesn't equate to them being the only people getting help IME.


ProudAS · 16/07/2015 18:49

Help and support is patchy to crap even with a diagnosis. Can see why a middle class Aspie might be able to buy support though.


zazzie · 16/07/2015 18:56

In my experience a child with sen will only get the provision they need if their parents fight for it. This requires knowledge, confidence and frequently money. Middle class parents are more likely to have these things.


EstaRive · 16/07/2015 18:57

Its not just about middle class/educated parents being able to 'research' or 'join support groups', though.

I have had to fight for every single bit of support my DS has. It has been time consuming, extremely stressful and I have had to employ many skills and qualities that am very much aware I have because I am educated, used to dealing with stressful meetings and complex reports and confident in arguing with dealing with people in positions of authority. Nothing has come easy.

Occasionally, I meet a parent who got a diagnosis within a couple of months on the NHS, or who applied for statutory assessment and quickly got a Statement with not much fuss, and I am always astounded. It isnt usually like that. Not for the vast majority I know.

As far as school places are concerned, my DS attends an ASC provision within a state primary school. Not all the children are from middle class or educated families by any means, but that is because there is a pretty good range of autism provision in my borough. The picture changes at secondary school. There are only two provisions and places are scarce. Parents have to pull out all the stops - be prepared to go to tribunal, engage lawyers, write lengthy, evidence-based reports etc - to be in with a chance of a place. The majority of these parents are highly educated and knowledgable about the system and how it works.

We are currently considering sending our son to a specialist residential school. In our local authority, a few kids are funded to go each year. As far as I know (and I know quite a few of the parents fro the last few years), you need a lawyer or to be shit hot at building a case to get the funding. Thats the reality.


IsItMeOr · 16/07/2015 19:12

I do agree OP, and it distresses me greatly when I think that there may be many desperately unhappy children (just like DS was last year) living in other families who aren't as well able to navigate the system to get the support in place. Although, for us, it was the school who initiated the investigations that led to diagnosis and proposed support plans.

There was a fairly surreal moment in our mediation meeting where we were trying to persuade the council to commit to review their decision not to assess DS for an EHCP, where they seemed to be checking that DS wasn't just getting the support at school because we were middle-class (and therefore presumed to be pushy).


Alfieisnoisy · 16/07/2015 19:17

Just getting a diagnosis as an adult is difficult. My DS is autistic and has ADHD, he is not unlike me as a child. You would think it wouldn't be much to ask for someone just to assess me and go through my childhood records. I might as well be asking them to turn all metal into gold.


Alfieisnoisy · 16/07/2015 19:17

...and don't get me started about trying to get the right support in school. Am about to pull DS out to home educate.

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