Aspirations vs Expectations

A couple of years ago, I came across a very useful paper that helps deal with that nagging question all parents of autistic children probably have;  that question is of course what will the future bring?  The paper is called Counseling Parents Regarding Prognosis in Autistic Spectrum Disorder.  It is only three pages long and it is free to download.

It is written by a very experienced Neurodevelopmental Paediatrician called Dr James Coplan, naturally he is an American.  He has an excellent website and he has his own channel on YouTube.  There are 4 short videos about the history of treating autism and one quite heavy one about challenging behaviors in autism.  In one he comments that autism is 130 years behind most areas of medical science.  He certainly knows his stuff, but he is not a researcher like us. 

 

Coplan applies four premises:-

1.    Atypicality (how autistic you are) occurs along a spectrum from mild to severe.

2.    The observed severity of autism in the same individual varies with age.  Many children with ASD do experience significant improvement over time.

3.    ASD of any degree of severity can occur with any degree of general intelligence.

4.    The long term prognosis represents the joint impact of ASD and their cognitive ability; higher IQ leads to better outcome.

The ideal outcome is for child B, whose atypical symptoms were always mild and whose intelligence is average or better.  The core features of ASD break up into fragments, which diminish in severity with the passage of time.

A less favourable outcome is child A, who has severe autism, plus mental retardation (MR).  As time goes by, he continues to exhibit the same level of autism, plus MR.

Clearly most children will be somewhere in between child A and child B.

 

Aspirations

I learnt from using ABA (Applied Behavioural Analysis) that it is always important to aim high, but not so high that your child is going consistently to fail.  If you aim low, you are certain not to achieve much; it is common sense really.  Every day raise the bar slightly and as the months go by, you will surely see progress.  If you are too ambitious, the child will get too used to failure and your efforts will be counter productive.

Expectations

I think it is best to leave the expectations to Dr Coplan and his framework.  Dr Coplan seems a bit fatalistic, he says that there is little evidence that the prognosis today is different to that in the 1970s or 80s. 

In my opinion, the tools available to parents today are far beyond the wildest dreams of parents in the 1970s; you just have to reach out, take them and apply them.  Rather than accepting a mediocre prognosis, do something about it.