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

[sunshield]

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.

[manicinsomniac]

I suspect the OP is probably correct.

However, I think you could take ASD out of the equation altogether and it would still be true - on average, children from middle class backgrounds and/or with educated parents have better prospects and outcomes in life than other children.

Also, I think it can occasionally go the opposite way with children from very educated or wealthy families.

I teach in a non selective private school and therefore we get a lot of children with SEN and ASD etc whose parents are desperate for answers and willing to pay for them. Most of our parents would fit the 'pushy mc' stereotype being described here. They can also easily pay for the £500 Ed Psych reports which are needed to get help in certain areas.

But occasionally we see something different - the parent who is determined that their child is 'normal' and 'doesn't need a label' and 'is just an individual'. One child we had a few years ago was quite severely autistic. He'd been granted a statement of SN when very young and in the state sector. Since then he'd been to about 5 private schools and his parents had moved him every time the school had raised the 'issue' of autism. We didn't know he had any AN until he turned up for his first day. Parents were extremely successful people and refused to engage with us about their child's difficulties at all. I've seen the same with milder difficulties on several occasions.

[plainholly]

There is a fair bit of research which has been done which supports the OP's view, though a lot of it is from the US which may not be transferable to the UK with its health care system. There is also research which shows that it is less likely to be diagnosed/supported amongst those from a BME background (which often, but of course not always, correlates to lower incomes).

e.g. psychcentral.com/news/2011/04/07/poor-kids-still-less-likely-to-get-autism-diagnosis/25096.html says
Poor kids seemingly are still less likely to get a diagnosis of autism, despite similar prevalence rates to children better off.

www.ncbi.nlm.nih.gov/pmc/articles/PMC3402594/ says While the prevalence of ASD does not differ across racial and ethnic groups, a limited number of studies have shown that children of African American, Hispanic, and Asian descent are less likely to receive early diagnosis of autism than Caucasian children

journals.plos.org/plosone/article?id=10.1371/journal.pone.0011551 says A number of clinical and population-based studies subsequently have reported positive associations between autism or ASD and SES indicators such as parental education, occupation, or income

www.autism.org.uk/about-autism/our-publications/reports/our-policy-and-research-reports/missing-out.aspx says Children with autism from black and minority ethnic communities experience discrimination on two fronts – their disability and their ethnicity

[Alfieisnoisy]

I found the diagnosis the least of my issues tbh. It took a long time but we got there eventually. Far more of an issue us then getting the right support in school and everywhere else.
My son has been utterly failed in his first year at secondary school. This is not the fault if his excellent teachers but rather of a system which cannot meet his needs.
What is worse is that the LA thinks this is okay.....it isn't. If I was not a proactive parent my son would be left to flounder.

Thankfully I can and will home educate if necessary but I shouldn't have to. Fact is that successive Govts have closed the schools which could have better met the needs of my son and others like him.

My choice now is a special school or home education. He is deemed too bright for the special schools so my only option is home education. I am angry about that as I'd like the choice. So it's home ed by default. ..and thankfully there is a thriving home ed group locally who have made me very welcome.

I am fairly well educated and have a degree....if I have found it hard then how does anyone with less advantages cope without getting lost in the system?

[QuestionsAboutDS]

My DS's inner city primary school with a fairly deprived intake did pretty much all the work for me when it came to getting his diagnosis and statement, so it wasn't driven by my ability to negotiate the system in that respect, although I did write one good summary of his problems in the statement application, (with a lot of help from the MN SN board).

But I suspect that my MC status and the way in which I (and DH of course) communicated with the largely white MC young teachers made a difference because they started from the assumption that DS's issues were not due to poor parenting. Nobody ever mentioned parenting classes

However to be fair at the HFA parents workshops I did see a very wide cross section of society represented, so it's definitely not only the WB MC children getting diagnoses in my areas.

[Sirzy]

I think rather than it being about class it's about parents willingness/ability to fight and articulate their concerns. I do think that some proffessionals go for the "judge a book by it's cover" approach which can make it harder for some families.

I think the school can make a massive difference to. DS school is very proactive and is working with me to help DS access support in the build up to diagnosis rather than ignoring the issue.

[Planesmistakenforstars]

itdeepenslikeacoastalshelf Oh no, ime mc parents are taken more seriously, and assumed to be good parents by default.

The skewed comment means that, in our Trust at least, kids being referred for ADHD assessment were overwhelmingly from the more deprived areas and underperforming schools, which was the opposite of the ASD referral demographic.

[JJXM]

I suppose I'm middle class by income and educational background (doctorate) although I was in care and come from a very poor family. However, my education helped me get the help my ASD child needed. I'll contrast my situation with one of the parents whose child attended the same group sessions.

1. there was a 12-18 month waiting list for an ASD assessment - this was unacceptable and so I complained to the NHS trust and then went for compensation with the health ombudsman. We were seen within three months.
   
   
2. the lea turned down our application for a sen assessment - we immediately appealed and complained. They agreed to assess quite quickly after that but we still complained and stood up for ourselves in a face to face meeting where they tried to intimidate us. We ended up with compensation and an apology from the council chief exec.
   
   
3. lea tried to fight us over our school of choice - we complained and they backed down.
   
   
4. got DLA high rate care on first try
   
   
5. relentlessly pursued our DS' social worker about respite - phoning him every week to chase up.
   
   The other boy in our group - it was a parents only meeting but his mother turned up with him in tow because she had no childcare and she had to contact her social worker. That boy only attended 1 out of 4 sessions so could not get the full help available. His mother eventually fell out of the system and her child with her. As there is a 12 month waiting list to get back in then I think his opportunities may be limited.
   
   I don't think it was a class thing but I know the difference education can make when doing this kind of thing - I come from a research background so gathering lots of sources for reports/complaints was a skill I'd worked on previously. But there is also as other posters have said a dogged determination on the part of me and my DH. We got to the stage where we realised politeness gets you nowhere and we became very thick skinned and did not care about the feelings of professionals who had tried to best to screw us over.

[sashh]

I think there is also a 'don't want to interfere' attitude that if a professional thinks a child needs help they can only suggest things to parents.

Not to do with Autism, just general neglectful parenting.

I written a few times about my neighbour whose dd was a complete waste of space and her 6 children have ended up being fostered by gran or auntie.

One of the children (the youngest) couldn't walk properly and one of the older ones had a problem with her eye. her mum told her top sit near the board at school and that was it.

Within weeks of the fostering the girl had glasses and an appointment to see a specialist at the hospital and the one who couldn't walk was making progress now he didn't spend most of his time fastened in to a push chair.

In the 5 years the girl had been at school some teacher must have noticed the problem with her eye. But other than asking mum they probably didn't think they could do anything.

[itdeepenslikeacoastalshelf]

Planesmistakenforstars I'm interested in what you say about assessment for ADHD being skewed the other way. Do you mean that children of MC parents are more likely to have their problems put down to bad parenting and not have them taken seriously?

[FujimotosElixir]

Fwiw my ds is high functioning asd, and gets the least help of the 5 asd classmates because he's not disruptive, LD so swings and roundabouts.

[FujimotosElixir]

*ime

[FujimotosElixir]

Sorry didn't make myself clear, time boys even with sen are 'difficult' 'disruptive'

[Rudeabaga]

re: op I'm fairly middle class and get no help whatsoever.

[ExtremelyStubbornAndSuspicious]

I don't think girls with ASD are treated more favourably than boys with ASD. Quite the opposite in fact. There's a massive lack of recognition of how ASD affects girls, and a lack of support in schools because girls often tend to internalise their distress so it isn't obvious. Also support groups tend to be very geared towards boys. This is a generalisation of course, but my experience all the same.

[ouryve]

For those trying to find schools, edubase is a searchable online database of all schools. I wish I'd known about it several years ago.

[amothersplaceisinthewrong]

Middle Class parents will nearly always be more informed, know how to get the best out of the system and won't be fobbed off...

[FujimotosElixir]

Classism hugely affects educational achievement even in NT so even more so for SEN children. Gender is also an issue disabled girls are treat more favourably than boys

[DepecheNO]

I would like to raise the the issue of support available for students versus jobseekers, the latter being on the whole a more vulnerable group in which disabled people are disproportionately represented. It makes me sick to think that a person could be deprived of support a university would thrust at them because of a condition which limits their access to employment as much as their access to education, all because those struggling to find and keep work are valued less than students similarly struggling to cope but subject to the dubious privilege of plunging deep into debt because of their ability to pass exams. This was my reality.

No help with diagnosis when I was 19-21, unemployed, later flitting between exploitative zero hours jobs because the thought of dealing again with Jobcentre employees to whom anxiety was a fictional creature scared me more. At 21 I talked my way into a university place on a low offer and the uni paid £300 to have me assessed privately in order to access DSA which funded personal support workers to help me organise, prioritise, and above all not drop out. In a parallel universe I am underemployed, under constant high stress, unaware that I have ASD, unable to prove to employers my processing problems, and have no access to the antipsychotics I am prescribed primarily for ASD-related anxiety / intrusive thoughts / inability to sleep from overthinking.

If anything, my lack of diagnosis as a child was due to so-called "middle class" parental indulgence (fiscally we were working class), but I can tell you I most suffered for it between leaving secondary and starting uni - a gap which probably wouldn't have existed if I'd had appropriate support at school and college.

[BatFoxHippo]

Agree about the report writing / research skills and money to throw at the problem. But I think it is more complex than that.

I used to go to a parents support group and there were all kinds of reasons people were there. What I noticed with some not middle class parents was that they distrusted all professionals and didn't have any faith or hope that there were kind, helpful, knowledgeable doctors/teachers out there, who could help their dc and support them. So they didn't fight for their dc to get diagnosed and get help because they didn't feel there was any point.

So its not just about being intimidated by the process but also never having a good experience yourself with professionals, you don't see that as a possible source of help for your own dc. You just get on with it and try and cope yourself.

[Planesmistakenforstars]

I used to work in CAMHS. The children being assessed for ASD were generally from what would be considered better schools in more affluent catchment areas. I think there is something in middle class parents being better able to access those sevices, being believed that behavior is due to a diagnosable issue rather than poor parenting, and negative behaviour of poorer kids being dismissed as expected or as a result of poor parenting. Assessment of ADHD on the other hand very much skewed the other way.

[ohtheholidays]

No I don't agree,we aren't middle class but our 2 children that are autistic have received lots of extra support from they're schools.

Myself and my husband have also been offered support if we need it from they're schools,they're specialists and our local hospital.

I think you have to really fight and play your corner very well to get the help and support for anyone that is asd.

[Athenaviolet]

I've seen this pattern with young people who have been LAC (in care). They are expected to be 'trouble' from the start, behaviour is because of 'bad' genes and/or 'bad' parenting. No one ever seems to look into investigating diagnoses. Imo ALL LAC should be assessed for a range of problems.

[CrabbyTheCrabster]

You have to be rich to afford property in Surrey.

What a silly generalisation. We live in Surrey and we are certainly not rich. Where we live there is plenty of affluence but also plenty of pockets of deprivation.

[LeChien]

We were told over and over, by the CDC, by CAMHS, by teachers, to trust the system, that all the experts were fabulous but they weren't.
The experts, including the paediatrician and psychologist, had very narrow, stereotypical views of ASD, and disregarded everything we said, and also ignored the findings of ds's ADOS assessment.
The same thing has happened to too many people in my area. Those who can afford it go private and get support for their dc, those that can't carry on struggling.
I met a lady last week who is just about to go through the assessment process, she was told aggressively by the ASD co-ordinator that there was nothing financial to get in a diagnosis and that she wouldn't get any support, and why did she want a label for her son anyway? They really do set out to make sure you feel as shit about yourself as possible, when for most people, they are the only experts accessible to give you answers and set the wheels in motion to help the child.