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

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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.

How does one go about finding out what specialist schools are in the local area ? I've found my daughter has made very little progress this year and I'm starting to think perhaps the mainstream school is to big perhaps ? So would like to explore other avenues / schools possibly.

I come across many children of clients where dx has been delayed often quite significantly because the children are labeled as just naughty or the parents are labeled as failing or lacking in parenting ability.

The amount of times I've come across incredibly good parents from poorer back grounds who have been refered as neglect cases that have later turned out to be unfounded, it becomes slightly more sickening when exactly the same circumstances happen in more middle class families and no referral happens.

I've known of parents from poorer households request help that costs money and be threatened with safeguarding visits unless they drop the request.

My experance is that unless you are lucky trying to get a dx if you fit into any less than ideal group takes longer and can be rather more worrying for the family.

If you are not educated and knowledgeable about entitlements you get fobbed off usually as routine

Faf,

You can get a list from ofstead and the LA of every SS in your area and the next one indie and state

ptolemy that's just it though, often children of poorer families don't get support in school, because their needs are presumed to be down to poor parenting and poverty (either directly or indirectly).

For example, if a child lives with grandma in a caravan, in an informal care arrangement due to mum being incapable of looking after the child due to heroin addiction, and the child has attendance problems at school, who is really going to investigate whether the child has SN or is just naughty? OK, so that's an extreme example- but it wasn't until mum got off the heroin, had the child returned, the child went to school regularly and was still having major problems that the child's SNs were actually taken seriously, the child received a dx and suddenly made huge progress behaviourally.

The support from school will be different according to where the problem is perceived to lie. A poverty struck child who is having difficulties concentrating in class might be given food and nurture type attention. If a more well off child is having difficulties concentrating in class the teacher might ask parents to take them for an eye test or hearing test, or organise catch up lessons.

There might also be an assumption that a child won't amount to much because of their family background- it's kind of assumed that children will follow more or less in their parent's footsteps. If parents don't work, it's assumed the child won't be driven to get a job either. If parents work in low paid jobs, it's assumed that's all the child will aspire to. So when a child from one of those backgrounds is struggling, it might seem like it doesn't matter, that they wouldn't go on to higher education anyway.

It's such a vicious circle- the parents might be in that situation because of unsupported SNs, which often seem to run in families, then the child doesn't get the support they need either so will be trapped in a similar situation...

I get where you are coming from, op. However, I think at times being middle class just gets you labelled as neurotic instead. I'm middle class in a pretty varied borough in London. It's taken almost 2 years just to get my dd onto the waiting list to be assessed. During this time I've seen an NHS child psychologist for a year, who disagreed with ASD. My dd is violent, threatening and self-harms. She can also be popular, engaging and intelligent. In that TV programme, she is like Beth. Seems very 'nt' but is really quite complex.

Earlier this year my dd saw a cahms practitioner after self-harming. She instantly referred her to the ASD pathway and, reading between the lines, I think she was a little shocked it was so obvious with dd but she's remained undiagnosed.

Looking back now, I realise that my db is also autistic, my mum is uneducated, married a shit partner who was a violent alcoholic. Bad family life, I guess it was all put down to that. Db now doesn't work and never will. I have the benefit of seeing how shit life has been for db to make sure that I push for dd, despite the fact that everyone thinks that I am a neurotic mother. Despite saying they think dh and I are good parents, we are offered parenting courses. I can have to physically restrain dd from running into the path of cars on the way to school, but she is apparently 'fine' during the day?

While I'm not neccesarily disagreeing with your hypothesis, I don't think that it is that clear cut. Being middle class can exacerbate the view that you are an over-anxious and neurotic mother. Still, we don't have a diagnosis

I think Surrey has more pushy middle class parents than most of the UK. You have to be rich to afford property in Surrey. I worked at a special school and several working class girls with severe autism.

To be honest OP, I think that is the case. DS 5 will be going to an independent special school this year and I had to pay huge amounts of money, go to out, know about SEN law etc to get him into that school.

However, when the Judge saw me, she was shocked as I she hasn't come across a parent like me before. Well, I don't really blame her, I am only 21, just graduated from University, particularly don't live in a wealthy area and is struggling financially.

I met many parents who were battling the education system, and most of them were middle-class, I did feel a bit out of place...

So many grammatical errors...

In order to get your LA to pay for the needs of a child with AS/HFA to be met you have to be intelligent enough to learn the regulations, confident enough to believe in yourself when they are telling you that you are wrong, confrontational enough to make them abide by the rules and resilient enough to keep getting up from the million ways they find to knock you down and keep on fighting. I've got my DD2 into an independent school after years of battles and I am still having to fight tooth and nail to make sure her needs are met.

It's a shit system that unashamedly meets the needs of the children whose parents have the resources to fight long and hard and leaves the rest to flounder.

When DS was diagnoses, I remember somebody saying to me 'the squeaky wheel gets the most oil'. I think middle class parents tend to be better at being squeaky.

It can also take a huge amount of money. DS has got a place at the school we wanted, after a fight which has cost us £3000+, and there are parents out there who will have spent much, much more than that.

Diagnosed, not diagnosis

To really know for sure you'd have to do some kind of analysis on the applicants to the school, their socio-economic background and if there were any correlation between affluence and successful applications.

It could be that poorer families just don't know about the school and don't apply for places, in that case I would want to know what the school is doing to address this. It could be that the application system is so complex requiring every box ticked and every i dotted that less able parents just can't navigate through all they need to do. Again, I'd want to know what the school is doing to address this.

Is there a bias toward affluence in diagnosis? Does anyone know?

What I'm reading here is that there does seem to be bias in the system that causes indirect discrimination against autistic children from less affluent families. If you can't afford to spend thousands, then you won't get the support your child needs. That doesn't seem fair.

My ds has just got a diagnosis of HFA/PDA.
The hospital CDC where he was assessed earlier this year were dreadful. Despite ds meeting the criteria for ASD in both the diagnostic interview and his ADOS assessment, they wouldn't diagnose and decided his behaviour was learnt, manipulative and attention seeking, and that dh and I are crap parents and that he would be easier to manage if we only had one child .
We're not middle class, but I am bloody stubborn and knew there was more to it, so we ended up going private, where ds got a very straightforward dx because the CDC had already proved that he has ASD.
Our local CDC seems to go out of their way to make parents feel shit about themselves and their skills as parents. It's very hard to keep going when you're already under pressure. If I hadn't done so much research into why ds was doing the things he was doing and didn't have the MNSN boards, I would have given up and spent the next few years watching my son get more and more out of control with fuck all support.
I'm pleased that we are hopefully now getting help for ds, but feel awful for the people going through it all without that option. It shouldn't be as hard as it is.

Perhaps there is also another force at play, where undiagnosed autism may be associated with learning disabilities or low educational attainment because the school environment was so shite.

If autism is genetic, then it could also explain why some children don't have adults to advocate for them, because they are unable too. Perhaps this also leads to drug use, alcoholism, etc etc.

Conversely, HFA is associated with average or above average intelligence (I hope I've understood this correctly) then perhaps families have the ability to advocate for their dcs???

Since going through the system with ds, I've found that I most likely have AS.
Ds's ASD has been something of an obsession for me over the last year or so, which has meant that I've kept fighting because there was no stopping until we'd got where we needed to be.
I've found it incredibly difficult to keep advocating for him and my mental health has taken a severe dive because of it, but giving up is not an option (although it's tempting at times).

From my experience, I think that middle class/educated parents probably have more resources and skills to be able to find out what support is available and to fight for it, and that extends to all areas of support for children with SN (particularly for kids with HFA/AS/PDA, in my opinion).

I'm thinking about Shortbreaks and personal budgets in my area as an example - so not education, but a good example. Parents with children with severe learning difficulties or very complex special and medical needs (often children with a social worker) seem to be offered a fairly decent package of respite/shortbreaks/funding by the LA. But outside of that group, the parents who get the provision and funding are the ones who a) know about it and b) can confidently argue their case for it.

I had to do quite a bit of investigation even to find out about what was potentially available for my son, and then write a lengthy (honestly...prohibitively lengthy and complex!) form to access that support, even though my child is entitled to it. I was also able to question what his school and various therapists had written written in their supporting statements and get them to change things to better reflect his needs - to basically argue my point with professionals who are 'experts'.

So basically, unless you have a social worker to do all that for you, or can spend hours tracking down information and then confidently fill out a very long and complicated form (and understand the way it is 'scored')...you have little chance of ever getting that support.

This was just for one aspect of DS's support. Yet parents have to be able to employ this kind of energy and knowledge and confidence in their viewpoint over and over again - to get the right school pace, the right support in school, the correct benefits, respite, inclusive play opportunities etc etc. Its a BIG ask for, say, a single parent working and raising other children, or someone who has a basic level of education, or someone for whom English isn't their first language.

Is there a bias toward affluence in diagnosis? Does anyone know?

I would imagine so, although no hard evidence. I look at my DS sometimes - huge for his age, behaviourally challenging, mixed race - and think how many big, aggressive black boys are being a belled as 'difficult' and 'unruly' right now in London schools...but who don't have what DS has - two parents who are able, for a multitude of reasons but all related to our education and economic situation, to fight tooth and nail to have him understood and supported and not written off?

It makes my blood boil.

To really know for sure you'd have to do some kind of analysis on the applicants to the school, their socio-economic background and if there were any correlation between affluence and successful applications.

The system blocks parents long before they get to the point of applying to the school. There's a whole minefield of SEN provision to navigate before your child gets to the point where a local authority would consider paying for provision like this for your child.

LeChien - totally empathise. I also think that I have AS, although the exhaustion of trying to make sure my DS has been sorted out over the years means that i have no fight left in me to seek an official diagnosis myself.

I also think my ASC helped me to fight for DS. I was like a dog with a bone, totally focussed and almost lawyer-like, in my quest to get him a Statement and the right support etc. Exhausting, though. My mental health goes up and down over the years because of it, too. I am learning to pick my battles lately....

I have a son aged 3 who has autism and developmental delay.

The trouble is the whole system is skewed towards those who are articulate and intelligent enough to access it. I feel like I'm blowing my own trumpet and I really don't mean to but I think part of the reason we've been able to come so far on the road to accessing support for ds is because I'm quite good at understanding and filling in forms and doing a lot of research into both his condition and the support that's out there.

We were incredibly lucky to get high rate care dla for ds for example but I'm sure part of that was because I was able to research how to fill in the forms and do so in the appropriate way to demonstrate how much more care he needs. On other forums I've read posts from mums and dads who have been unsuccessful in claiming and it's clear to me that sadly because of the way they write they struggle to make their child's needs understood. I think there are a lot of children out there who are missing out on money and opportunities they are entitled to purely because their parents aren't supported in making applications in the correct way.

There is also a need to challenge the system on a relentless basis and those who lack confidence in their own abilities tend to sit back and trust the experts they are presented with, which isn't always the best thing to do.

Agree, Fairylea.

The ability to write and present an evidence-based argument, and the confidence to challenge professional opinion have been absolutely key for us, too.

Being a bit of a know-it-all helps .

DS's school and therapists hadn't even heard of PDA when I first raised it as a potential diagnosis for him. Now they're all over it.

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.

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.

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.