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That’s not for our kids

Posted Apr 28 2011 9:26am

A recent Guardian Roundtable touched on an interesting subject for those of us who are responsible for children with learning difficulties. The article was written, sourced and published in the UK but I believe it applies everywhere in the world where there are children with learning difficulties.

Just 6.4% of people with learning disabilities are in paid employment and that stark statistic – and the shocking waste of financial (and human) resources behind it – formed the backdrop for a recent Guardian roundtable discussion.

This issue has its root, I believe, in the way we are led to think about our children from birth:

When it comes to setting expectations for a child with learning disabilities, things can start to go wrong the moment they are born. The roundtable heard how health staff use their “breaking bad news” training to counsel parents, leaving them with the impression that there’s not much incentive to look forward to the future.

I remember the day we received the news that our child was autistic with profound learning difficulties. There were 3 calm staff members and a box of tissues on the table. By the time we left, the tissues had been used – and although the staff were gentle, kind and wonderful people who clearly were fond of our child – they too fell into that trap of ‘breaking bad news’ mode. A mode that, by its very tenor, fulfills the expectation of being bad news.

The truth is, in my opinion, that with a little effort from health care agencies we can move from:

staff at one special school who, when the issue of employment was raised, replied: “That’s not for our kids.”

to a de facto position as espoused by agencies like Remploy who are the UK’s leading provider of employment services to people with disabilities.

But we’re not anywhere near that yet. In my own experience too many parents of people with special needs are content to wallow in the comfort of ‘putting it off’ – their children are still young. But consider this – we are far longer a time adults than we are children. Our children need to learn how to function in the world. This won’t be brought about by and ideaslistic fights against a . Neither will it be brought about by those who insist on misrepresenting the nature of what autism is to all rather than some.

One speaker summed up the fundamental question underpinning the whole debate: “Do we believe that people with learning disabilities and their families are worth it?”

Are they worth the upheaval and political effort it would take to transform a system that often fails them when it come to finding work?

In any society that claims to be fair, children with learning disabilities surely deserve the same life chances as other young people, the roundtable heard. They should be encouraged to have ambition

  1. Brian Morgan:
    An interesting release here from Journal of Pediatrics -Screening for Autism Could Begin at the 1-Year Well-Baby VisitA simple checklist can detect autism spectrum disorders, language delays, and developmental delays as early as the 1-year well-baby visit, according to a Journal of Pediatrics study.Thirty pediatrics offices in San Diego County participated in a program that screened all infants for autism and related disorders at the 1-year checkup. Screening involved a 24-item checklist that parents completed in about 5 minutes in the waiting room. Of some 10,500 screened infants, 184 failed and were tracked every 6 months for 3 years. Some 40 infants who passed served as controls.During follow-up, 32 of the 184 infants were diagnosed with autism spectrum disorders, 56 with language delays, 9 with developmental delays, and 36 with "other" delays. The positive predictive value of the checklist was calculated at 75%. All controls continued to test normally throughout follow-up.[Editor's note: The journal has not yet posted this article online, although the embargo has passed. We've linked to the early-release page, where the article should appear shortly.]Journal of Pediatrics early-release page (Free abstract)Infant-toddler checklist (Free PDF)Physician's First Watch coverage of 2007 AAP guidelines on autism screening (Free)
  2. Harold L Doherty:
    Mr. LeitchThere was no misrepresentation of autism in my post as you alleged. The misrepresentation arises on your part from portraying autism as other than what it is ... a disorder. In the case of the Non-Aspergers's part of the spectrum there is ample research indicating that the vast majority to quote CDC Autism Expert Dr. Marshalyn Yeargin-Allsopp also suffer from intellectual disabilities. More than 40% of the entire autism spectrum according to two recent CDC surveys and 80% of the non-Asperger's autism population, according to the 2006 Senate brief of the Canadian psychological association also have intellectual disabilities.You misrepresent autism disorders by helping perpetuate a false picture of autistic persons as being bright but awkward socially. In doing so you help obscure the realities faced by the vast majority of those with Autistic Disorder. You are ashamed of any association between autism and intellectual disabilities and you simply ignore the literature and credible authorities.It is you who misrepresents autism and who contributes to the further stigmatization of all persons with intellectual disability.Shame on you.
  3. Kev:
    Harold, you just make it up as you go along don't you? My own child is intellectually disabled - do you feel I am ashamed of my own child?And Harold? Go back and read your own posts on the matter. Nobody else I've met claims autism is solely as _they_ see it. You do though. Why do you think that is?
  4. Sullivan:
    Harold L Doherty,"You misrepresent autism disorders by helping perpetuate a false picture of autistic persons as being bright but awkward socially."Who does this? It isn't Kev, and it isn't anyone on this blog. It isn't even the self-advocates that seem to bother you so much. Autistics have big challenges, whether they have additional disabilities or not. There's no point in downplaying the struggles of a group of people that are the natural allies of our kids. Just like there's no point in not being allies to all autistics, whether they are like our kids or not.
  5. Nightstorm:
    For the record. I have Autistic Disorder. Not Aspergers I was reevaluated by specialists this pass February.Harold said: “You misrepresent autism disorders by helping perpetuate a false picture of autistic persons as being bright but awkward socially.”Kav said: Who does this? It isn’t Kev, and it isn’t anyone on this blog. It isn’t even the self-advocates that seem to bother you so much. Autistics have big challenges, whether they have additional disabilities or not.There is a reason why it's called a spectrum disorder. Autists of all kinds have all sorts of personal and diverse issues. I am normal intellectually to some degree but I have massive gaps in certain parts of academics, Math for instance. I can't do anything above basic math. My grammar skills are sub par, yet I have excellent grasp in reading. It's varied and irregular. We have various and unique challenges based on the individual diagnosis and nature. I don't think any of one on the blog or myself (in fact I champion more exposure for autists with intellectual delays) are ashamed of autists with intellectual disabilities or delays. After all with my own gaps I am not one to judge.

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