ASD: Not a ‘Magical Mystery Tour!’

Autism Spectrum Disorder; unlike Downs, Angelman or Fragile X, for instance, might really be considered more of an umbrella term than a primary diagnostic category. Prevalence rates, while very definitely far higher than had years ago been thought, continue intensely debated. One diagnostic pattern I’ve observed over the years is a tendency to isolate out selected behavior characteristics to include stereotypy or perseverative behavior as the primary rationale for a diagnosis of ASD. There definitely is more to a diagnosis of ASD than that….

Another important point is that since autism is a remarkably heterogeneous disorder which expresses across individuals in such incredibly diverse ways means that presuming a uniform cause, process or ‘treatment’ really is not logical. While certain things – certain combinations of things, more often – may greatly help selected individuals, there is no singular or explicit behavioral, instructional or medical approach for persons with autism.

While the cause of ASD remains a mystery; how to help, support, teach and most effectively intervene is not at all mysterious. I’ve now been working with and supporting persons with autism and those with many other diverse needs for a great many years and have watched a lot of trends and ‘promises’ come and go.

Pushing the many myths of autism; making autism into a kind of ‘magical mystery tour’ has helped a lot of people make lots of money while often confusing and misleading families and, even more, children. And I don’t intend at all to infer that selective alternative treatments and alternative medical supports always do not – for some persons with autism – have a valuable role to play.

A primary message is that the diagnosis, alone, does not at all drive or determine what to do next and that alternative treatments; medical or otherwise, need to be pursued with great and individualized care in conjunction with an ongoing and more comprehensive approach supported by the field of Applied Behavior Analysis.

And none of this will still go very far at all if a child has no, or minimal, functional communication; needs 24 hour a day supervision; bedtime, mealtime and/or toileting remains a struggle; she or he can’t interact with and enjoy being with peers; is a respondent rather than a participant; isn’t

successful at home or school; can’t enjoy increasing preference, independence and autonomy as do other children.

That there remains huge clinical and diagnostic debates and disagreement about what is and who should even be identified as ASD also means that subsequent claims to any uniform or single treatment process/framework for those identified as ASD should raise many bright red flags.

Proclaiming a uniform treatment process/framework can mislead many stressed, loving, hardworking and absolutely devoted families who may pull back from what we know works; what we know can and will help. I’ve seen, and been saddened by, just this dynamic many times over the years. What works; ‘best practice’ becomes the priority which would then be combined with, rather than excluded by, individual and empirically determined alternative supports.

There is no way around the fact that this comprehensive process takes work and a strong working partnership. It takes time, demands a highly individualized understanding of the person with autism and those around him/her and full system involvement. There is, unfortunately, no ‘key.’

And so far as claims to be able to ‘cure’ people with autism which is, after all, among a number of developmental behavioral disorders: why not other developmental behavioral disabilities? Why will whatever is so claimed to work for kids with ASD not do so with Fragile X, for instance?

Though having more structured clinical treatment is likely to come as medical and interconnected research continues on autism and related disorders, we are not there yet….

Again, that autism expresses so very differently across so many persons with ASD would directly infer that there is not a common point for treatment in the same way that exists for more ‘traditional’ medical diagnoses as asthma or juvenile diabetes.

We also know from empirical research that there are no educational, psychological or behavioral strategies used uniquely for those with an autism diagnosis. Like other developmental behavioral disorders, ASD has its own unique ‘symptom clusters’ which then drive specific priorities. But there is still no single or unique behavioral or educational strategy used only for autism.

I’ve been making ‘house calls,’ working in the community and schools and providing family support for a very long time and know firsthand that we can be consistently very effective to include with

those children who have been the most challenging…the hardest to reach…where the quality of life of the child and family is at the highest on-going risk.

But this still can always and only be done one child (or adult) with autism and their families/caregivers at a time. We do not, and should not presume, to either treat or respond to the ‘diagnosis’ but each individual – and each family – one at a time.

March 4, 2015

0 responses on "ASD: Not a ‘Magical Mystery Tour!’"

Leave a Message