Parental Bias and Autism

We often get posts on the form asking for advice with autistic children. And I can't help but notice the requests overwhelmingly relate to low functioning autistic children. As someone who is quite high functioning and had a very disrupted and turbulent childhood I can guarantee you it's not because high functioning autistic children don't have just as many issues. Nore is it that high functioning autistic children are particularly rare. We recently had a discussion on this point in another thread and figures I dug up indicated around 40%+ of autistic children being diagnosed these days are of average or above average intelligence.

So the question I'm asking is this. Why don't those parents come looking for help? Is it because the main stream schooling and support systems are so much better at supporting high functioning children? I doubt it. Is it because they tend to think of their child’s behaviour as 'naughty' not 'autistic?' Is it maybe they don't accept or agree with their child’s diagnosis? What do you think it is?

More to the point:

  1. How can high functioning autistic children get the help they need if their own parents won't seek it on their behalf?
  2. How can we raise awareness of the needs of high functioning children among parents and professionals?

Edit ps: For the simplification of this entire discussion and to avoid a long drawnout arguments over semantics. Instead of high functioning we shall say high IQ meaning an IQ of 85+ and instead of low functioning we will say low IQ meaning an IQ less than 85. As measured on a standard clinically approved IQ test.

Parents
  • For the simplification of this entire discussion and to avoid a long drawnout arguments over semantics. Instead of high functioning we shall say high IQ meaning an IQ of 85+ and instead of low functioning we will say low IQ meaning an IQ less than 85. As measured on a standard clinically approved IQ test.

Reply
  • For the simplification of this entire discussion and to avoid a long drawnout arguments over semantics. Instead of high functioning we shall say high IQ meaning an IQ of 85+ and instead of low functioning we will say low IQ meaning an IQ less than 85. As measured on a standard clinically approved IQ test.

Children
  • Peter, I don't think IQ is the answer. In terms of " functioning", autism is a disorder of social communication, not a deficit in intelligence. Although co-morbidities mean that people with severe communication difficulties often also have an intellectual impairment, the two clinical entities are different. You can have people with significant intellectual disabilities who have more developed social skills than some autistic individuals with low-average or even average IQs.

    When it comes to kids, I would say that "functioning" includes things like -

    Plays alone > Plays alongside > Plays team games but does not follow rules > Plays team games like peers

    Unable to decide what to eat for lunch > Can choose from two or three items by pointing > Has favourite food items > Can make a balanced choice at the canteen. Likes Thursdays because that's pizza day.

    Points or grabs > Use PECS to ask for an object > Uses single words or short phrases > Asks politely for what he wants, even if it is not visible.

    In education terms, we are talking roughly about a special school for kids with profound learning disabilities, a special school or unit following an entry-level curriculum (what used to be Moderate Learning Difficulties), or an autistic child with support in a mainstream classroom.

    Of course, there are grey areas and overlaps ... but if I get a call regarding a child, it helps my thinking to get a rough idea of their level of need.  What I am talking about is not a fixed diagnostic category, but a general view regarding a child is at or above age-related expectations, slightly below, or significantly below.

    I am going to do a family court report regarding an eleven-year-old boy, and in order to plan my approach, an IQ score is not helpful. Am I going to meet a bright but geeky Aspergers' tween, or a non-verbal child with the developmental age of a toddler? Will he have an age-appropriate understanding of my role, and what the court case is about, and be able to say what he wants?  Will he be able to understand a simple explanation with social stories, maybe express himself by drawing pictures or answering closed questions?  Will he have no idea what my visit is about, and I will need to use indirect methods to attempt to judge what his wishes and feelings are?  That is what I would regard as "functioning" in this context.

    In terms of intellectual ability / IQ that may be relevant when it comes to the methods I use - I use different versions of Barnardo's "worksheets" and some kids write sentences, some draw their answers to verbal questions, or just point to pictures. Some kids can complete standardized tests such as the Adolescent Wellbeing Questionnaire unaided, some can answer verbally, and some cannot manage it at all.