Are parents exploiting autism?

The Telegraph has recently reported on data from the Department of Education that 61,570 schoolchildren in state schools have been recorded as having an autism spectrum disorder making up almost 1% of the school population.  It is reported that five years ago, the number of children classified as being autistic was  39,465 which accounted for 0.5% of the school population.  The latest figures now means that one in every 125 children are autistic an increase from one in every 200 pupils in 2006.

More controversially the paper reports that some ‘experts’ claim that the rise in autism may be due to parents using the condition to get easier access to resources rather than there being a genuine increase in autism.

I’m not sure what evidence there is to support such claims but in my experience I do not see evidence of parents seeking a diagnosis of autism just to get resources for their children.  Getting a diagnosis is not an easy process.  As I have experienced with both of my children, it is a protracted affair that entails questionnaires, interviews and assessments and meetings with clinicians.  It can take months, if not years, to get a diagnosis.  It is not a process that I believe parents willingly put themselves through unless there is real concern and anguish over their child’s development.    Getting a diagnosis is an emotional and difficult stage but nonetheless it helps families like mine to understand and help their children.

Furthermore, the notion that support is freely supplied once a parent has a diagnosis for their child is not accurate.  In practice, a diagnosis does not necessarily mean that a parent can easily access resources particularly in times when budgets are tight and services under resourced.

As I have documented on this blog, a diagnosis is the start of a very long journey as a parent and family.  From then on it is a continual fight to find and secure the right services, therapies or support.  As I am experiencing, mainstream schools (certainly in my area) are poorly resourced to deal with autistic pupils with the result that some children like my daughter end up with further health problems and out of education.  Even those that are fortunate to get a statement of SEN face the prospect of travelling huge distances to specialised schools such is the inadequate provision for those with autism and aspergers.

Any suggestion that parents like me are exploiting the system for the benefit of their children is unfair and sends out yet another negative message about people like me.  Its too easy for people untouched by the realities of autism and aspergers to stand on the sidelines and make cutting remarks about what is causing the so-called rise in autism spectrum disorders.  It’s too easy to assume that when a child doesn’t have an obvious physical impairment that there is no problem and then to blame parents.

Such claims are irresponsible because the language of blame filters through to the general public.  They read this stuff and they start to think that perhaps the little girl down the road who has asperger syndrome doesn’t really have an autism spectrum disorder after all, that perhaps her mum has labelled her because she is one of those pushy parents that only wants such and such for her daughter.  At worst they blame her parenting and even question her child’s condition to her face.

It sounds an unpleasant scenario doesn’t it but it is one that unfortunately is the reality for many people like me.  It is an attitude that I have even come across in meetings with those professionals who have little understanding of the autism spectrum.  Parents like me have not set out to manipulate autism or to deviate resources from those more needier.  We are merely being good parents, recognising and responding to our children’s needs.  People can hardly blame us for doing that; if anything people should applaud us for caring for our children and trying to do the best for them.

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17 Responses to Are parents exploiting autism?

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  3. If anyone else would like to contact Frank Ferudi (the sociologist in question), his website is here http://www.frankferudi.com, and his email address here: frank@frankfuredi.com.

  4. Blue Sky says:

    This report looks to me like another way to blame the parents for their child’s autism or asperger’s. I must admit I did feel a certain amount of relief when I got a diagnosis, because otherwise his difficulties were caused either by the breakdown of my marriage or poor parenting. Once I got a diagnosis there was very little help from the system but at least I could find support groups and sources of information, advice and help. But the idea that parents would try to label for an NT child who needs no extra help sounds preposterous to me. Did they find any actual examples?

    • Aspie in the family says:

      I can’t find any evidence for these claims at the moment. These were comments made to the paper by a sociologist who clearly has no experience of parenting a child with ASD. His comments don’t make sense to me as it doesn’t fit in with my experiences or that of many other parents that I know. Another damaging article, I think, to both parenting and autism/aspergers. Thanks for commenting. Deb x

      PS I also found relief with my son’s diagnosis as I no longer felt that it was my parenting. It also meant that I could learn about ASD and adapt my parenting which for my son was the best thing.

  5. I find the opinions of these ‘experts’ truly offensive. As a parent of children on the Autism Spectrum and having spent the last 2 years surrounded by other children and their parents I have never found anyone that actively sort a diagnosis to rort the system.

    I have however witnessed both for my children and others the neglect that both government, the health and education industries in general treats to people with Autism. Since the introduction of the Helping Children With Autism Package in 2007 the government has built greater awareness and has had data about the children that would be about to enter the system with Autism. And what have they done … nothing. The level of funding for a Autism is minuscule and does not reflect need or the size of the problem. More children are diagnosed with autism than diabetes, AIDs and cancer combined but do not get anywhere near the funding of either of these from government. And it is offensive for government to suggest that people will fake a diagnosis to get access to help for their children. Would they even dream of saying that to a parent of a child with cancer … NO.

    I just think that ‘experts’ in public administration are looking at the numbers are and are freaking out. They are realising that even at the minuscule level of service they currently provide that when the children from the last few years start hitting school it is going to just blow the budget … and they don’t know what to do. Easiest answer … people are rorting the system. Neither professional or constructive.

    • Aspie in the family says:

      Thanks Bronwyn; I really appreciate your comment. I understand all what you say and fear similar moves are going on over in the UK to curtail the demands of ASD diagnoses on school budgets and other support services. Already there are suggestions that the British goverment want to remove over 150,000 children from the special educational needs system; one of their arguments is that schools are covering up poor teaching by hiding behind SEN labels. I’m not sure what the evidence is for this but in my experience and after speaking to a lot of parents in my area, this is not the case (certainly in my area). Deb

  6. Jazzygal says:

    A diagnosis of Autism is very hard to get no matter what country you live in and, like Crystal Jigsaw says, there are plenty of parents out there who refuse to get a ‘label’ for their child.

    That said I’ll tell you my story. My boy was diagnosed with ASD 8 years ago…after a 2 year battle to have anyone accept that there was a problem. The interventions and resources that came with that label (plus a LOT of work by me!!) meant a HUGE improvement for my boy over time. So much so that my boy’s diagnosis was ‘reduced’ to PDD-nos. I was lucky to get that as the psychologist wanted to remove the label entirely. I fought tooth and nail and got PDD-nos…which helped us retain the NECESSARY resources. That would probably put me in the centre of that report if I lived in your country. Bottom line is we parents ONLY fight for the resources that our children NEED. And if they NEED them then there IS an underlying condition! And I couldn’t care less WHAT they call that ‘condition’ so long as the resources are forthcoming.

    xx Jazzy

    • Aspie in the family says:

      Thank you for commenting Jazzy. Like you, I felt personally attacked by these claims because I had to fight to get my son and daughter diagnosed. I defend my right to do so as nooone in the school or my local authority had any understanding of autism or aspergers to identify the symptoms of an ASD, not even the paediatrician with whom I had to have an argument with to get referred to a specialist team. Some people are going to assume I’m a pushy mum but I’m not naturally like this. I had to become assertive as my son’s development and behaviour were of a massive concern. As you say, we only fight when there is a need; I never sought an autism diagnosis because I didn’t know anything about autism back then. I just knew something was not right and he needed help. Deb x

  7. This is bizarre. I have never experienced this. I’m a psychologist so I do LOTS of testing. I have NEVER met a parent who came into my office actively seeking a diagnosis. The typical scenario is one in which the parents arrive in my office saying, “please, tell us he/she doesn’t have autism.” Parents usually present terrified that their child might have autism. I have to work with them on dispelling some of the popular myths associated with autism and they relax a bit, but only a notch. I’d love to know where these “researchers” drew their sample of parents from.

    • Aspie in the family says:

      I’d love to know how this expert can support his claims. To just say things like that is deeply damaging, I think. Thanks for commenting. Deb x

  8. JuliesMum says:

    I’d love to meet these imaginary families whose children are apparently rolling in the lap of luxury, education-wise because they are diagnosed autistic. What resources exactly are they supposed to be getting? Are these children getting small-group teaching (or perhaps even – shock, horror – one-to-one teaching)? Are they being taught to use learning strategies more appropriate to their style of thinking? Are classrooms adapted because of, for example, problems with sensory stimuli? Are staff being given appropriate training that is specific to handling the child and the way that their autism affects them? Or in reality, are the parents getting one meeting a term with a harrassed SENCO who has a piece of paper labelled IEP but not much else? Are they getting fobbed off when they ask for an educational psychologist because, in reality, that appointment is too expensive for the school? I’ve never yet met a family with an autistic child for whom what I felt was envy.

    • Aspie in the family says:

      I agree Juliesmum. There are a whole load of myths circulating around in our society that paints parents like me as grabbing resources and depriving needier children. I have even heard some people describing autism as being “in fashion”. Whatever do they mean by that? They clearly have no idea about our lives or that of our children. If they did, then they would understand why we fight as we do. Deb xx

  9. Jim Reeve says:

    This is another example of teachers and educators thinking they’re smarter and more educated than they are. A lot of teachers think they’re doctors and that their opinions should be treated as such. Doctors go to school for 10 years and education trustees shouldn’t say these things because honestly, they have no idea what they’re talking about.

    • Aspie in the family says:

      You have a point Jim. My children’s school showed total disregard for my children’s diagnostic reports. Even when my son had a serious asthma attack and was hospitalised they did not realise the seriousness of his condition and pressured me to get him into school before he had totally recovered. Realising that they had little understanding of asthma, I kept him off a little bit longer so I was confident he would manage ; I didn’t trust the school (his old primary school) to care for him. Deb x

  10. Blimey, I can’t believe it’s even possible for parents to get their child diagnosed in order to get extra resources. It’s a process that takes months to reach a conclusion, in our case, 18 months. I wonder if this report has been produced as a start to make the diagnosis more difficult to attain, thus “cutting costs” and reducing the amount of statements and support.

    In my experience, I’ve come across a lot of parents who won’t go through the process because they don’t want their child to live with a label. They fail to realise that the label means support for their child. For parents to be exploiting autism turns the whole issue of raising awareness on its head. I think reporters at the Telegraph need to do more research and determine their facts before trying to damage the aspect of the statementing system even more, especially when it is one so complex.

    CJ x

    • Aspie in the family says:

      Hi CJ, thanks for commenting. I’m wondering the same about the aim to make getting a diagnosis more difficult and so reduce the amount of support and costs. Its very worrying, if this is the case. Deb xx

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