Trolls and ABA

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.

 

 

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Turning 18 Transition into adulthood

Transition into adulthood. What does that actually mean?

I think the boys have the idea that turning 18 is going to open the door to a magical new world. One in which they find girlfriends, start driving, no longer require a carer to take them out, travel independently and everything else that they see everyone else doing.

In reality, there won’t be an instant change though how I am to tell them that?

Yes, we can take them to the pub for a pint but they don’t actually like beer. And that’s about the only change that will happen for them on their actual birthday. Oh and they will officially be adults but what difference will that make?

Behind the scenes aka me, everything is in motion. Endless assessments and meetings and form filling to ensure that they get what they need financially and educationally. Currently we get 4 hrs a week per boy in direct payments which is meant to cover someone to take them out, to teach them social skills, to teach them travel training and other life skills like cooking, budgeting and shopping. So, of course, they haven’t had a chance to learn these things all in 4 hrs a week but it’s time that they did. I juggle their hours constantly and decided that social skills ie getting out and about, in Thomas’ case to go running and for Benjamin to go swimming and to the gym were priorities to use those hours on. After all, I am no cook either so for now , we will cook for them and look after them but one day they do need to start learning these skills for themselves.

They will also have to leave their very small special needs school this summer where they have been for the past 8 years and go to a large college but not until September and not until I have finalised it and we have got a new EHCP. More about that later.

It’s surreal to look back and remember where they started out, as non verbal 3 year olds when they were diagnosed with classic autism and very little hope for their futures. Ok, they will never drive a car, live totally independently or do the things other people take for granted that their 18 year old sons will do like going clubbing, go on holidays with their ‘mates’or  but we don’t have the anxieties that go with this, worrying about our children smoking, drinking too much, taking drugs or dropping out of college. It’s like our boys are suspended in a time warp of early teenage years where the future hasn’t quite arrived but they are living a great life while they await it.

I’m not sure they really know what they are missing out on, do they even feel they are missing out at all? I wonder if we pass our hopes onto them and so it is really us who feel we are missing out. They hate to read, they can’t comprehend fiction, I would be lost without books but they aren’t. Perhaps Thomas looks at me in the same way and wonders how I can live without football or running. So we have learnt over the years not to compare their lives with anyone else’s but to compare theirs with how they were and how they are now and keep looking ahead to the future.

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