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Locked into autism

Effective treatment will only come if ministers offer parents the dignity of individualised funding for their children, says Penny Wallace

Sixty years ago, Austrian psychiatrist Leo Kanner published data describing a subgroup of learning disabled children who exhibited abnormal social responsiveness, lack of flexible thinking and specific speech and language difficulties. The label given to this group of children was "infantile autism".

The estimated prevalence in 1943 was around one in 10,000 individuals which has risen to around one per 166 of the population currently. Subjective GP experiences confirmed by the recent publication of a study by the MIND institute in the United States, rule out broader parameters for diagnosis and better identification as the only causes for the apparent escalation in occurrence.

Still, there is little known about the condition and debate continues to rage about its causes, most notably the implication of the measles, mumps and rubella (MMR) vaccination.

For many parents, the cause of their child's autism is academic. It is the way that their child and family are treated post-diagnosis that causes the greatest stress, even more so than the practical difficulties they face due to having a child with a complex disability.

Parents requesting a different treatment from that which is regularly available are often perceived to be demanding and unreasonable. Local authorities generally refuse funding requests for intensive home treatments such as "The Son Rise Programme" and "Applied Behaviour Analysis" on the basis that there is no scientifically cogent proof of their efficacy.

This throws up several issues. First, provision for autistic children in Scotland has developed around the principles of TEACch (Treatment and education of autistic and related communication-handicapped children). Eric Schopler, the scientist who pioneered this approach, published empirical data describing its perceived benefits. Refusing funding for alternative treatments based on lack of scientific evidence is therefore a blatant double standard.

Second, assuming TEACch is suitable for all autistic children, by Schopler's own admission, the treatment is unlikely to effect significant change if delivered below an intensity of 25 hours per week. Parents report that pre-school children receive as little as three hours of teaching (including speech therapy) per month. Ironically, provision delivered appropriately would cost the same as any of the alternative treatments that parents may wish to pursue.

Furthermore, Scottish Executive recommendations state that authorities should not refuse provision on the grounds of cost alone. If departments are following statutory guidelines, their primary consideration should be the adequacy of the treatment.

In a situation where each intervention has its scientific exponents and no universally accepted evidence, who decides which methodology is most effective? Publication of new research regularly elicits those with opposing views to claim that the offending study is "deeply flawed".

In reality, authorities are so committed to one set of principles that there is no room for a truly individual approach and this seriously undermines legislation to consider parents' wishes. Since successful intervention is partially reliant upon parental compliance at home, removing or overruling choice is essentially giving up on the child before you start.

Islands of good practice do exist where professionals have adopted a flexible approach and have been open-minded enough to shed the paternalism and inadvertent condescension that often accompanies the ownership and dissemination of expert knowledge.

In my experience, parents are more than prepared to address and deal with the actuality of their child's disability. What they are not prepared to do is submit to systemic pedantry. They believe that children are entitled to have the highest expectations set for them, opportunities to achieve their potential and the right to avoid automatic relegation to the "beyond hope" league by virtue of their diagnosis.

In June this year, the Government introduced direct payments for disabled children, initiated by individual social work assessments. Some families of autistic children have been waiting more than two years to have their home situation assessed. For them, direct payments remain an unobtainable goal.

Until systems of government offer the dignity of individualised funding, parents will continue to persuade, convince, negotiate and demand that authorities take proper responsibility for their children.

I wonder if Kanner realised the can of worms he was opening when he first gave us autism. I doubt it.

Penny Wallace is a former nurse who provides information for parents of autistic children.

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