WA Register for ASD - Interesting Observations
This register has been operating for 16 years now, collecting data on diagnoses of Autism in WA. The purpose was to keep track of numbers, and ages at which children were being diagnosed, and to provide researchers with a cohort of subjects to aid in research into Autism. As parents you may have been asked to join in by signing to allow information about your child to be used. Even if you did not sign, some basic information which did not identify your child was collected. For more information on the work of the register, check their website.
The WA register recently published its 2014 report. I was very interested in the following breakdown for children diagnosed in 2014:
- 49% no intellectual disability
- 6% intellectual disability confirmed
- 17% vulnerable for intellectual disability
- 28% not sufficient evidence provided (possibly too difficult to assess)
This is contrary to the expected outcome where the large majority of children with this diagnosis end up at least with a degree of intellectual impairment. There are no real statistics to trust but estimates vary from 80% to 50% needing some degree of support, and some 30% remaining without adequate functional language.
What happens to them, or more exactly, how do we fail to educate them?
We all know how difficult it is for children to be integrated if they do not have language. They are accepted at Kindergartens and Preschools and, with support, can manage the early grades, but both teachers and children soon find it too difficult to communicate with them and they find it too stressful to cope in a speaking environment. Teachers find it to difficult to continue integration and inclusion when the school curriculum becomes increasingly language oriented. Gradually the students with an ASD fall back into the Special Education stream where they feel less stressed. However, they also miss out on the education their age peers are getting.
Without language it is difficult to learn and to keep up with cognitive development. The good visual skills most of them possess can only help them achieve concrete concepts, and abstract thinking is too difficult. As they grow older they often begin to fall back, IQ deteriorates, skills remain visual and restricted and they are aware that they are not like their peers. They are not like the other children in the special school either as they are much more competent visually, yet they cannot keep up with the typical peers. Depression is not uncommon.
So what can we do? We need to focus more on language development when they are young. All the children who are vulnerable, and who may become intellectually impaired if left alone, need more assistance. We can teach language with visual supports, but often these are not used sufficiently and parents only begin to worry when the child is about to enter preprimary. Too often there is hope that they will naturally just catch up. But when this does not happen, it is too late. Using visual supports early is the best way we know of assisting language development and it can do no harm. In our experience children begin to try to talk and if they possibly can they will, but a lot of exposure is needed for that to happen. If they are slow in gaining speech they can at least use this interim code to communicate, and it also tends to lead to early reading.
It would indeed be great to see statistics which show that most people with ASD can achieve normal intellectual development and maintain it as they develop skills with education. They can contribute to the community and not just live on benefits.
Jura Tender