THE BLOG

Do We Really Need to Find a 'Cure' for Autism?

24/01/2014 17:07 GMT | Updated 26/03/2014 09:59 GMT

Does autism need to be cured? I am forever reading articles, mainly on American sites, that claim they have found a 'cure' for autism. These are observed when scrolling down my Twitter feed or conducting online autism research, I mainly look for interesting news stories and new interventions, ways in which I can help my child. I use the word 'help' rather than 'cure' as this word sits uneasy with me.

The National Autistic Society (NAS) state on their website.

'There is no known 'cure' for autism. This does not mean, however, that nothing can be done for a person with autism.'

It then further adds:

'Most interventions are aimed at helping children with autism. While children with autism are not 'curable' they can be helped, especially if their autism is diagnosed early in life'.

This is exactly my view, I look at ways in which to enable and help my son Tom, live his life to the best of his ability with the use of early interventions, sensory play activities and the use of visual timetables. I find the word 'cure' and the connotations of this that a person on the autistic spectrum can be made 'all better' and therefore fixed very unsettling.

I also found the following NAS comments about the many thoughts on 'cures' interesting:

'There is a growing movement among activist adults with autism and Asperger syndrome who don't think in terms of 'curing' a disorder but instead of celebrating difference.'

ASD in my mind is a disability not a disease, therefore it cannot be cured. To 'cure' means that something needs to be fixed. Does my son need to be fixed?

This then brings me onto the subject of disability. Over a year ago I read a book entitled, Raising Children with Asperger's Syndrome and High-Functioning Autism: Championing the Individual, by Yuko Yoshida. I very much enjoyed reading this book and found it very thought provoking and although my little boy is not on the high functioning end of the spectrum nor has Asperger's Syndrome the book was still very relevant for me.

What particularly interested me was the theme that Autism Spectrum Disorder (ASD) is both a 'disability' and represents 'individuality', that both co-exist and that you cannot really have one without the other. It was also expressed that the terminology used also depends on the particular moment in time and the viewpoint that is being expressed. I totally agree with this.

ASD is a disability; there is no getting away from this. I have a disabled child, he has a developmental disability. This is shown in the 'triad of impairments' as classified by Wing and Gould (1979). The three impairments are of communication, socialisation, and social imagination. Also added to this are various sensory issues and needs, Tom has Sensory Modulation Dysfunction and his sensory needs can fluctuate on a daily basis.

As well as he word 'cure' I also have difficulties with the phrase 'different ability' when used as opposed to 'disabled', this though is just my opinion. Perhaps the people who choose to use this phrase are uncomfortable with the word 'disabled' that perhaps it has connotations with weakness but I do not see it this way. For me to say that my son has a 'different ability' takes away the fact that he is disabled and why would I choose to do this? He has a disability, he has ASD. He needs specialist services and provision; he has had to go to a specialist ASD school so why would I choose to say that he is not disabled? I would be denying him the services and interventions that he needs, I would also be lying to myself. I do not see this as showing weakness but rather acknowledging what is fact and being able to access help. This disability though does not wholly define him, it is a part of him, a huge part of him and it effects everyday life, it is an all-consuming disability but interweaved into this is his personality and 'individuality' and this is what needs to be celebrated and embraced.

I think it is far healthier to 'accept' that your child has a disability and to then focus on their individuality. I also think that to focus upon 'curing' your child is futile. This though I imagine is a difficult process for many parents and I admit is still a difficult one for me. I think I will always have to learn to accept that I have a disabled child, whatever the word 'accept' means, for me it just means living with it on a daily basis, I cannot change anything, it is who Tom is.

But what I have most certainly done with vigour is embrace his individuality. This is a lot easier to do. Would I take away his disability if I could? I would be lying if I said no, if I could I would but then my Tom would not exist as I know him, I would have a completely different Tom and I would not want this to happen. Therefore I accept his disability and embrace his individuality, he is who he is. He does not need to be 'fixed'