Autism and parent blaming
I am lucky to have just had a letter on autism published in the New Scientist. I was responding to an article published 26 June 2010, p 42-5 which looked at some of the interventions and therapies parents of autistic children use on their children. Not surprisingly for a scientific magazine, there was a questioning tone as to why some parents do not consider scientific best practice when chosing such interventions.
We live in a time when there are expectations for everyone to ‘reach their potential’. Many parents believe their child’s success is up to them. So they check the development of their child from conception against some norm, and in a competitive world calculate what they need to do for their child to exceed that norm.
In this context a diagnosis of autism can be the cause of considerable parental grief. When public education and health support for autism is hard to find, hope can be bought in the form of medications or interventions. In an era of individual ‘choice’ the scientific method is just one paradigm on offer, alongside anecdote and personal testimony.
The answers include more government-funded autism health and education support services, and better science teaching. Governments also have a role in providing best practice guidance, such as the extensive New Zealand Autism Spectrum Disorder Guideline ( dexmh/nz-asd-guideline-apr08).’www.moh.govt.nz/moh.nsf/in
Autism and guilt
‘Those familiar with the scientific method may be puzzled why many parents of autistic children seek interventions and therapies with no evidence base (26 June, 42). However, it is not so surprising when you consider the context of autism and parenting.
For decades, parents have been told that they are the cause of their child’s autism. The idea promoted by psychologist Bruno Bettelheim in the 1960s and 70s that autistic behaviours are triggered by a mother’s emotional frigidity is still widely believed. More recently, autism has been attributed to parental genes. Thus a diagnosis of autism can trigger feelings of parental guilt.
Many parents seek to counter the notion that their child’s autism is their fault by doing whatever they can to alleviate the effects, even trying medications and interventions that have not been scientifically verified.
Increasing scientific literacy in the general population would help, as well as more government-funded health and education support services for autism. The best-practice guidelines published by the New Zealand ministries of health and education (bit.ly/9uSYUU) are a good example of how governments can help.’
Alyson Bradley wrote on August 24th, 2010 at 11:25 pm:
Societies need for conformity can be damaging, the need many feel to have a stereo type family, often impacted by the media images, of course no 2 families, as with no 2 individuals are alike, these images only exists within each individuals expectations. And it saddens me what lengths some parents go to, often because of being misinformed by a minority wanting to cure and take away the fabric of what makes the individual who they are. Even worse some even sell fad treatments to the un-knowledgeable. Yes some of us need support, some need more help than others, but in away that apples to everyone, we simply have varied needs with different strengths and weaknesses.
Parents need not feel guilty for having children, every child a gift and all have something to bring to this world in their own unique way. I feel we all should embrace each individual child, guide and instil confidence and let them help guide us, see through their eyes!
Listen to the children: http://asplanet.info/index.php?option=com_content&task=view&id=127&Itemid=171
Hilary wrote on August 25th, 2010 at 9:08 am:
Thanks Alyson
Jenny Smith wrote on September 11th, 2010 at 1:12 pm:
I agree entirely.
Life is difficult enough without focussing on the neagtive. We should treasure the gifts that each individual child brings to us and there are many, if we look for them.
We have struggled to allow our daughter the freedom she needs because of the risks to her. It is difficult to give her this freedom because of the risks involved.
We feel she needs to explore the world.
Not only have we created a physical set of barriers to stop her wandering but we have also now established an electronic fence (NOT ELECTRIC) that notifies us as soon as she has left our safety zone.
So far so good, in the space of a week we have had a good catch. We were able to retrieve her as she was heading down the road.
We now know where she is and also know when she leaves our safety zone without having to constantly watch her.
I can now focus on other things. Its great.
I have provided a link if you are interested.
Hilary Stace wrote on September 13th, 2010 at 10:20 am:
Thanks Jenny. Having had the experience of an autistic child who could and did escape, this seems a great idea. As an adult he enjoys long walks around the city and surroundings, but now he uses a cellphone so we are in contact if any issues arise.