I was having coffee this week with an ex tutor who is now an ABA consultant and amongst other things, we discussed ‘trolls’ online.
Recently, on my book page on Amazon a man used the review section to put his own views across, basically blaming me for causing my boys’ autism by not taking some form of fish oil in pregnancy. Fairly offensive, but mostly because he added it as a book review when in fact it was not a review but a form of what is commonly known as online ‘trolling’.
I have been fortunate enough until now to only receive positive feedback about my book and my boys and their progress. So , I am not going to be upset by it and it was quite a mad accusation anyway.
It did make me think though about other sites, particularly facebook where myself and others have been known to message ‘troll alert’ when an unwelcome visitor posts negatively on someone’s page. Usually, it is an anti ABA troll, most of whom are very verbal, articulate adults who have been diagnosed with autism as adults. They have views which differ greatly from the parents of chidren who have such severe autism that they are mostly non verbal. I did write recently about there being different ‘types’ of autism and this is where I think the differences really show themselves.
The very able adult autism community who have a voice because they literally have voices and can talk, maintain that they are proud to have autism and don’t need curing. I and many others totally respect this point of view. However, myself and other mothers with severely affected children aren’t looking at ABA as a cure but as a method of helping our children to achieve life skills like toileting and eating a variety of foods and a method of communication at the very least. For the luckier children like mine, ABA has literally given them a voice but perhaps never one as articulate as some of the trolls.
I think the autism community need to respect each other’s point of view. We have enough opposition in fighting LAs for funding for ABA to help our children acquire life skills and spend a great deal of time trying to educate the general public about our children’s issues. How are we ever going to get people to accept and help our children with autism when even those within our community argue against us sometimes.
Although I accept that some people don’t understand how truly life changing ABA can be if taught well by people who are well trained and who care, I wish they wouldn’t compare their own situations to those with profoundly different needs who do need that help.
We as parents need to be the voices that our children don’t have. Without ABA my boys would not be who they are today. It makes me very sad (and a bit mad too) to read negative posts from people who don’t actually understand how effective it is accusing mothers of not allowing their children to just ‘be’ autistic. The implication is that they don’t need to be any different ie they don’t need changing. A child who is in distress, and who cannot communicate desperately needs help and I would have been a negligent mother if I had not tried to provide my children with that support.
So please, let’s unite within the autism community and respect each other’s opinions.