Unapologetic insolence from an aging subversive

Unapologetic insolence from an aging subversive

Wednesday, 6 April 2011

The Riddle of Autism

I came across this article today.

Autism has always intrigued me, partly as a result of running five special schools (in an earlier life) two of which had a high proportion of kids with Autism enrolled.

Education systems struggle with the condition – and it is a condition, not a “disease”, despite its labelling as such in some media.

I’m no expert – there are very few teachers who are, and this is part of the problem. Last time I looked, there is no teacher preparation course in Queensland in the category. A search on “autism electives”   at Griffith University – one of the premier teacher training institutions in Brisbane revealed nothing.

Given that the incidence rate is 1 in 110, this is a major issue.

Working with kids with Autism in mainstream classes is a struggle for most teachers. The vibrant social environment that is a powerful learning tool for regular kids is often poison for kids with Autism. They can’t cope with the unpredictable and open-ended atmosphere, and either withdraw or act out. Managing asocial or anti-social behaviours in a class of 25 kids is very difficult.

I’ll take you through the article and comment as I go. My comments are based on 20 years of working with these kids – not on any study or research. I’ve made all the mistakes.

My notes are in italics. The rest of the post is the article and my commentary -

A few decades ago, autism spectrum disorders (also termed Pervasive Developmental Disorders) were viewed as relatively rare disorders that impacted around one in 1500 children. Since that time, the number of children diagnosed with autism spectrum disorders has increased dramatically. Current estimates of the prevalence of autism spectrum disorders (2009) are about 1 in 110 children.

The reasons for this increase are attributed to several factors, although experts acknowledge that more research is needed to fully understand this trend. Some factors which appear to contribute to the increase include:
• Change in diagnostic practices among mental health experts, resulting in children that used to be diagnosed with problems like mental retardation, now being diagnosed with autism spectrum disorders.
• Improved screening and detection of autism spectrum disorders.
• Potential ‘true” increases in the frequency of autism, due to risk factors such as increased parental age of having children.

There has certainly been an increase in diagnostic rates, and the points about screening and diagnosis are undoubtedly correct. There is, I believe something else happening. When I began working in Special Education in 1971, these kids were extremely rare. They just weren’t around. Now, they constitute up to a third of the enrolment of Special Schools.
I’m sure there are unknown exogenous factors. It may be diet related. These days we consume much more food which has additives designed to improve shelf life and appearance.

The built environment uses a range of chemicals to fit out interiors, many of which are not fully researched. The asbestos phenomenon is a reminder of how this factor works.

There are endogenous factors as well.

The way we rear our kids has subtlety changed. We tend to supervise them closely, often indoors. We park them in front of screens at an earlier age. They are often deprived of the free-flowing learning environment provided by extended family and semi-rural living.

Perhaps some crucial phases of early social development are being compromised by this. I've noticed an anecdotal relationship between Autism and middle ear problems.

Signs and Symptoms of Autism

According to the National Institute of Mental Health, children with autism spectrum disorders have difficulty in three primary areas: 1) social interaction, 2) verbal and nonverbal communication, and 3) repetitive behaviours or interests. In addition, they will often have unusual responses to sensory experiences; such as certain sounds or the way objects look

The earliest signs of autism spectrum disorders usually are evident shortly after a child’s first birthday. However, reliable diagnosis of an autism spectrum disorder is usually not possible before a child is slightly older, around at least 1 and ½ to 2 year old.

Possible early signs of an autism spectrum disorder in a child include:
• Does not babble, point, or make meaningful gestures by 1 year of age
• Does not speak one word by 16 months
• Does not combine two words by 2 years
• Does not respond to name
• Loses language or social skills
Other indicators may include poor eye contact, not seeming to know how to play with toys, not smiling, or excessively lining up toys or other objects.

This is a useful summary.

Again, I’ve heard from so many mums and dads who describe that they noticed something changing in their child’s reactions between age one and two. They sense it, as much as anything, especially if they have experienced the normal development pattern of older siblings.

At this age, diagnosis is not always possible.

Diagnosis is based on a behavioural checklist. There is no “test” – you can’t take a blood or tissue sample which indicates Autism. Paediatricians I have spoken to admit they sometimes provide what they call a “charitable” diagnosis. By this they mean that if a diagnosis is borderline, they will confirm it, as they know that the education system will provide additional resources that will help the child and family.

Treatment for Autism

Behaviour Modification: Significant progress has been made in treating autism spectrum disorders over the past 25 years. Treatment typically focuses on the use of behaviour modification (applied behaviour analysis) to help a child with an autism spectrum disorder learn social skills, communication skills, skills to complete schoolwork, and skills to function as a family member. By combining a child’s interests, a regular schedule, and principles of behaviour modification, most treatment programs help a child participate in a range of activities that would not be possible without treatment.

Dietary Modifications: There are many reports of specific food restrictions (for example, gluten free) or dietary supplements helping children with autism.

Medications: There is no single psychotropic medication that has been developed to specifically address symptoms of autism spectrum disorders. For some children, medications may help with certain problems like aggressive outbursts.

In the first place – the word “treatment” is misused. Autism is not an illness – you don’t “treat” it.

In fact, I’d argue that using the medical model for dealing with children with Autism is a mistake. An educational (developmental open-ended) model is more useful. Applied Behavioural Analysis (ABA) as mentioned above, does work, but it requires enormous amounts of specialist input.

Most schools do not have access to these services.

There is learning and teaching model that works. I learned this as a special school principal faced with the challenge of programming for these kids with a limit on the resources available. Remember that special schools are staffed much more generously than regular schools.

Described simply, you need to set up three different environments for the child.

The first is intensive one-on-one instruction using basic stimulus-response principles. You need to teach specific communication and social skills in short intensive bursts. Strategies such as PECS (Picture Exchange Communication System) are useful in this context.

The next level is small group skill and practice sessions. This can be supervised by a trained Teacher Aide or Teacher (if available). These sessions are longer and less intensive, but there still needs to be heaps of structure, and they need to be carried out in a controlled supportive environment.
The third level is pretty much the open school environment. The child/children with Autism needs to be kept in sight by a staff member, and there should be carefully planned time-out and refuge strategies available if and when the environment becomes too overwhelming.

The activity during these sessions can be structured or unstructured, but it’s better to use strustured class time for this process. Few kids with severe autism can abide the free-flowing school playground.

The art in it is the fine-tuning of daily scheduling. The intensive programming probably is best applied during what is for the rest of the kids their playtime. Whilst the others are playing, the child with Autism is somewhere in a quiet structured environment in a training session. "Play" breaks for the child on the spectrum need initially to be structured and may have to take place in a secluded setting until his/her social skills are up to the regular play session. The child with Autism can join the outside school environment in structured times. He/she is managed more easily in these settings and less likely to become anxious.

The school day can be divided into thirds of about the same length.

The challenge, of course, is to timetable this programming arrangement in a way that makes sure the staff get a break, the kids are safely supervised, and the classroom space is available.

April is Autism Awareness Month. These kids and their families aren't getting a fair deal at the moment.

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