The Autism Diagnostic Observation Schedule is often called The Gold Standard for autism diagnosis. I say that it’s time for ADOS, and indeed the Autism Spectrum Disorder diagnosis itself, to be binned. Here’s why:
1. The term autistic describes a pattern of behaviours. Behaviours that all of us exhibit at one time or another. The term autistic just means these behaviours are excessive, it doesn’t tell you what has caused the behaviours to get out of hand. Autism is not a thing, like a cancer, autistic behaviour is a symptom.
2. ADOS records higher social skills. It sheds no light on why a child isn’t behaving in a socially expected way.
3. The term Autism has been in use for over 100 years. The word means Self-ism, which I believe is misleading. A more appropriate name would be Defence-ism.
4. The common assumption is that autism/ autistic behaviours are neurological and hard wired. But many of the underlying deficits may be developmental and can be improved on. Although, for some people there may be an actual problem in the brain’s hardware, such as a severe speech impediment or learning disability.
5. Some, but not all, ‘autistic’ people may have sensory processing issues. Others may have behavioural and motor planning issues that are wrongly interpreted as sensory issues. None of this is addressed by ADOS.
6. The widespread myth that autism is a fixed lifelong condition leads to lowered expectations by the professionals and teachers that are supposed to be helping children (and adults) achieve their potential. ADOS is just a snapshot in time, it should not be considered as a definitive description.
7. Simon Baron Cohen and others go round saying that autistic people don’t feel any empathy. So if your child hits another kid it’s because he’s a cold hearted autistic. Not that the other child provoked him, or that he misread the situation and thought he needed to defend himself, or that he’s jealous of the other child. Or when someone else hurts themselves and your child misreads the situation and opts out in panic, it’s not that his non verbal interpretation is wobbly, he’s just a cold hearted autistic.
8. ADOS may tell you that your child doesn’t have Joint Attention, suggesting that s/he notices things but chooses not to share them with others. Children who are engaged in defensive and avoidance behaviour probably don’t pay much attention to what’s going on around them full stop. Help the child to tune into the world and they will most likely be happy to share their observations with you.
9. If your child is diagnosed or suspected of having Autistic Spectrum Disorder you will be told that they don’t like ‘eye contact’. Perhaps even that looking at people hurts them. Well, yes aggressive and inappropriate gawping at people does feel wrong, but we all need to watch those around us to pick up facial expressions and body language. People who display the behaviours called autism can and should learn to read non verbal communication.
10. The best assessments get down to the nitty gritty of what a child needs to learn: occupational therapy, non verbal communication ability, sensory integration praxis test, speech and language assessments will all give you useful information. Why aren’t these assessments touted as the Gold Standard?
11. In most countries support is supposed to be based on need, not on the label. My child recieved a two year award of Disability Living Allowance because I described his problems in detail and had supporting statements from his doctor and the school. He also gets 10 hours a week of additional support at school. For what it’s worth he also has an NHS Occupational therapist and Speech/Language therapist. All without resorting to an official diagnosis.
12. Conversely, some parents may spend months or years chasing a diagnosis in the hope that it will magically bring expert help and understanding for their child. It won’t. You will have to make a detailed case for your child every step of the way.
13. Therapies offered by the NHS are thinly spread and inconsistent. At best you might wait months and months to see someone pretty good for about six sessions. But to give your child a best chance you will still need to augment NHS support by reading up and using different approaches yourself and by consulting with private therapists.
ADOS (and its ilk) has created the stratospheric rise in autism diagnoses, without bringing any real understanding for the huge variety of people currently labelled autistic.