Disclaimer-as many of you will know, the use of Applied Behavioural Analysis in children with autism, particularly those who are severely affected by autism, is a hugely controversial issue and this blog post is about my own personal views which I am aware some people will not agree with but my intention is not to offend and I am very sorry in advance if anyone is offended by my views.
Yesterday I watched a programme on the BBC IPlayer website which was called “Autism: Challenging Behaviour” and was originally shown on BBC 4 on Tuesday night. The programme had the right amount of balance in my opinion and featured interviews with people who were both strong believers in ABA and those who were against ABA. I found it a hugely fascinating programme. Like many people on the autistic spectrum who I have met online (oddly enough, it’s not a discussion I have ever had with those people on the spectrum who I know off line but maybe that will change), I am not a fan of Applied Behavioural Analysis. I agree with one of the principles expressed in the programme by tutors at a special needs school that used individual Applied Behavioural Analysis, namely working on negative behaviours so that the individual child enjoys life more. Every parent wants their autistic child to make progress and, indeed, a lot of people with autism who are verbal will say that there are aspects of their autism that they would wish to improve on. However, I disagree with the type of approach used. To me, it seemed a lot like training circus animals with a heavy emphasis on food as a reward (which is something that most professionals working in special needs schools avoid, at least here in the UK). The programme even mentioned how the approach had originally been tested on rats and pigeons. People with autism are not animals and treating them in such a basic and, to me, patronising manner makes me feel hugely uncomfortable. The autistic spectrum is extremely complex and varied and I thought that the school featured in the programme were dismissing the individual differences between children and using a “one method for all” approach.
I was also upset at the attitude of a Scandinavian ABA therapist, Gunnar Frederiksen, who was filmed during ABA sessions with a 3 year old boy in Norway. This therapist explained, with seemingly no regard to the feelings of people on the autistic spectrum, that he did not appreciate autism and could not see anything positive about it. I do not agree with this attitude. Every person with autism is special and sees the world in their own unique way. I have met and worked with a lot of people with severe autism who see the world in such a special way-their ability to get so much enjoyment out of what other people see as the tiniest things in life, such as certain sensory material, is a joy to see. As I have mentioned on this blog before, autism is an integral part of who we are and what ABA, at least the ABA practiced by Gunnar, seems to want to do is to “remove” the autism from the person. Autism, to my mind, seems to be one of the only conditions that attracts so many people who wish it to be cured. As somebody on the film mentioned, if they spent 40 hours teaching their child how to play the violin every week, it would reach the attention of Social Services but, with autistic children, ABA is seen as something positive because the idea of it is to make the child more “normal”. This is my main contention with ABA-autism is normal to us. It’s how we were born and, while huge progress can be made in everyone with autism, I have seen online that a lot of people on the higher functioning end of the spectrum who have been through ABA as children feel guilty as adults when they have urges to stim or are put in a situation that highlights their autistic traits. It is exhausting for us to fit into a world that wasn’t made with us in mind and yet people just demand “normality” from us without taking a look at themselves and how they could change their behaviour to get the most out of people with autism rather than making them feel continually distressed and traumatised.
I understand that some people will look at this post and think, “She doesn’t know what she’s talking about! ABA is designed for people on the lower functioning end of the spectrum, not people with Aspergers!” I am aware of this but, as someone with Aspergers, I feel obliged to defend people at all levels of the autistic spectrum. I don’t presume to speak for others but I am sure that people on the more severe end of the spectrum have their own views on ABA which they struggle to express because of their communication difficulties but that does not mean that we should not listen to them and work out their feelings on this through observation. Yes, people with autism need to learn new skills and need to learn that certain forms of behaviour, such as lashing out at others, aren’t the best way to communicate but some of the children in that programme were clearly distressed and were being pushed into things that they weren’t ready for. There was no denying that both of the little boys at the special school that used ABA had made a lot of progress by the end of the 6 months that they were filmed but my opinion is that progress can be made with other, less intrusive methods of support. Autism often appears to improve with age, particularly as people learn more about their own autism and devise coping strategies to get through life. This often happens regardless of the support method used, as long as they get support from somewhere. I do understand how upsetting it is for parents to be given such a poor prognosis for their child when they are first diagnosed with autism and I can understand why such parents often opt for ABA. These parents need support but I would just urge parents to really consider the best support for their child and consider the psychological impact of ABA. In the programme, a man with Aspergers, Damian Milton, who I have met off line in an Aspergers support group based in my old university town, speaks about how a lot of the principles of ABA seem to be giving a message to the child with autism that they are only worthy of love and affection when they display what is seen by people without autism as “normal” behaviour. I dislike the fact that ABA practitioners often try and get rid of stimming in people with autism. As mentioned on this blog before, stimming is a coping mechanism and a lot of people with autism have said before that, if they were not able to stim freely, they would be unable to cope with the busy and demanding world around them. It is not harmful to others so it really confuses me as to why so many people are against it and wish to eliminate self stimulatory behaviour in people on the autistic spectrum. In the school featured on the programme, one of the ABA tutors commented on how stimming stops children from being able to learn new skills. This, to me, displays a lack of understanding of stimming as a functional behaviour-a lot of people on the spectrum actually use stimming to help them concentrate on learning new skills. I don’t understand why people seem to find it so offensive. It might not be socially “normal” but it is our “normal”. As one woman with Aspergers mentioned in the programme, “It is a form of cruelty to deny someone who they are”. We do not try and change your coping mechanisms so please don’t treat ours as something so awful and horrendous.
I guess my final point is that, while I do agree that people with autism and their families should aspire to make progress, just as everyone in life should, this can be achieved without the use of ABA. I hope I did not come across as too harsh towards people who are firm believers in ABA but I do believe that being told every day that, essentially, the way you think is not desirable or socially acceptable leads to psychological issues such as anxiety and low self esteem which are often 100 times more damaging to an individual than their autism is. Observe the person with autism and learn from them in order to work out the best support method for them. I am not denying that ABA can lead to huge amounts of progress and there are some people with autism who have been through ABA and support it but I just think there are other ways to achieve the same goal. This world seems to be obsessed with “normal”-ask yourself why it is that there is such high rates of depression and anxiety in people on the spectrum and the answer is usually because of the attitudes of other people. Surely this is something that also needs to be worked on rather than the onus being solely on people with autism to fit in.
Once again, I am sorry if my views on this controversial issue offend but I watched the programme yesterday and it inspired this blog post. I know that I am not the sort of person that ABA is used on but it is an issue that I feel strongly about.