Why do headlines such as ‘new miracle autism therapy’ provoke a strong reaction for me as a parent of an autistic child? I am not the only one, as Russell’s post on Autism and Celebrity illustrates.
The day that latest story hit our media, Facebook groups for parents of autistic children lit up. One mother wrote that her phone rang nonstop with people telling her about this new miracle cure, implying that she must do it too. That story turned out to be about a popular behavioural therapy with its roots in early 20th century behavioural psychology as popularised by BF Skinner, and dietary restrictions and supplements that at their extreme have been linked with the spurious theories of Andrew Wakefield. So nothing new or miraculous there.
I have previously declared my interest in the contrasting disability perspectives Cause, care, cure and celebration, which for me has mainly related to autism. But why is autism cause and cure such a popular topic for the media?
I don’t want to criticise other parents as every autistic child and every family experience of autism is different. But such stories can be harmful. They reinforce the view of autism as something abnormal and undesirable, and legitimise treatments that may or may not have any scientific validity. But most of all they risk making parents of autistic children feel guilty.
Why guilt? My theory (borrowed from US autism theorist Majia Nadesan) is that it is due to the increase in autism diagnoses of the last few decades clashing with the rise of neoliberal economics. Under neoliberalism, every individual must ‘self-actualise’, meaning their role in life is to ‘reach their potential’.
Parents’ role is to make this happen for their children, turning parenting into a competitive sport. So mothers anxiously observe their babies to note any deviance from some ‘norm’, which they must remedy. But it is no longer the State’s role to help. The autism industry has responded, and only bad mothers don’t buy what is offered.
ABA – Applied Behavour Analysis, sometimes called Early Intensive Behavioural Intervention – is a good example of the pressures on parents. The theory is that autistic children have to live in our non-autistic world, so have to learn to behave and communicate as non-autistically as possible.
Training should start early. This requires many hours of one to one interaction, breaking down and repeating tasks using picture cards or other means, all reinforced by reward (and punishment). Physical punishment was dropped years ago but food rewards are still common.
The skill and training of the therapist is a key aspect of ABA, but regulation of the industry is haphazard. Such intensive therapy can be expensive and stories of families mortgaging the house are common, as it is not publicly funded in New Zealand. There is also no ‘control’ child to measure improvement against and any progress could be due to any number of variables including a normal development trajectory. But will parents say that the hundreds of thousands of dollars invested were not effective?
So when children diagnosed as autistic develop language and other skills it is often credited to the ABA therapy. There is a huge amount of research about ABA, much of it supportive, but the positive changes are often measured by other contested tools such as IQ.
ABA was such a controversial area that the developers of the 2008 NZ ASD Guideline (led by the visionary Joanna Curzon who tragically died last year) commissioned an additional review to verify the validity of their initial recommendations. Here is an example the Guideline from the section on teaching and learning in the early years:
3.1.8 Services should be available to ensure a young child is appropriately engaged across a variety of home, educational and community settings in goal-directed activities for at least 15-25 hours per week.
Some saw this as code for State-funded ABA, and wanted that spelled out. The review tweaked the wording of a couple of recommendations and added one that strategies based on ABA ‘principles’ (whatever that means) should be considered for all children with ASD. But there was also a caution about choosing a properly qualified therapist.
I was a bad mother. I didn’t do ABA. It wasn’t common in those days. My son’s father died when my son was three and private options were limited. However, we were lucky in that we caught the end of the caring State. A team of government-funded professionals worked together and provided services including speech therapy, play therapy and family support at home and at preschool. All long since gone. But good luck has been a bit of a theme for us.
From my experience, parents want other people to love their autistic child for the perfect human they are, not the person they are not, or could be. I would like to empower parents of autistic children, and for their families, friends and communities to support them. Other parents can be invaluable. Parents also need extended families prepared to learn about autism, not judge and not be fearful about helping out. They need inclusive and welcoming schools and communities, clubs, sports and numerous opportunities for plain one-to-one attention that is child centred, engaged and focused on the child’s interest. No one therapy will do it.
So ABA is not necessary for growing a good autistic citizen of Aotearoa/New Zealand. But support is. For those wanting to help out with an autistic child you have to find what interests the child has and incorporate those interests, or you won’t get far. You need time and patience. New skills such as learning to swim or going on the bus may take many tiny steps.
Siblings are often the best teachers as are grandparents - but not always parents (too risk averse, or just too tired). Here are some things my son did as a child with other people that helped him grow into the sociable, caring, employed adult he is: blowing bubbles for hours incorporating bubble related language; sweeping up leaves; watching, talking, playing with planes, or anything with wheels or water; repetitive ball games; patterned rhythms; watching and learning from more able children skills such as turn taking in simple games.
Autistic children are capable of communication with words whether verbal or not, so I would also like to see all autistic children have access to and training on the latest technology. A teacher aide patiently taught my son how to use a cell phone. Such a normal thing can be liberating.
There are numerous political issues too. I would like the State take up its responsibility to nurture all its citizens in all their diversity, such as restarting that State-funded child-centred professional support around each child that we experienced. Or extending it to some form of navigator/whanau ora or circles of support inclusive of professionals, community and family. These would help stop mothers feeling inadequate and bad.
To finish on a positive note here is a little video about what good therapy looks like, in this case music therapy. It is of Elliott, my friend Wendy’s son, at the wonderful Raukautari Music Therapy Centre in Auckland. Many years of careful relationship building and skill development lie behind this clip. But what joyous fun.