For a few years now, I have been approached on Twitter and other social media platforms by people who describe themselves as Neurodiverse, or #actuallyautistic. For those who have experienced or witnessed these conversations you have probably noticed that communications can be excessive and offensive. If you haven’t experienced this faithmummy’s blog gives a good description here of a parents experience.
From my experience, no matter what I say it is wrong so I have stopped engaging in conversations with them. They have made extraordinary claims about the things I do without actually knowing anything that I do. These have included claims of abuse and maltreatment of people I support that they have absolutely no knowledge of. I refuse to ignore their interactions, as knowing social media if their comments are left unchallenged they only go to reinforce themselves as their followers have similar views and therefore they self maintain this behaviour. I feel leaving their comments unresponded to or unchallenged only increases the likelihood these interactions will increase to vulnerable parents.
I take no offence in their comments as I have confidence in what I do. However, I am aware that not everyone who sees my responses will know the whole conversation, only the latest tweet. Some have misread my responses and do not understand all of the background conversation that has gone on with this. I wanted to attempt to put something here as an explanation about what their key issues are with me and what I feel are the facts behind this.
PBS is ABA in disguise
Their biggest issue by far is that PBS is underpinned by the science of ABA. From their perspective ABA is only early intensive behavioural interventions, and their understanding of this is it is 40 hours per week sat across a desk doing repetitive tasks for a token economy (discrete trial training). They feel this is abusive to autistic people and is an attempt to “cure” their autism. So in their view, if PBS is ABA then ABA is abusive so PBS must be abusive too.
In reality, early intensive behavioural interventions are broader than 40 hours of discrete trial training. It is not an attempt to cure autism, but an approach to build skills and independence and the skills targeted are those that are important to that person. I personally do not believe it to be abusive, but everyone is entitled to their own opinion. The science of ABA is simply the science of behaviour. It underpins early intensive behavioural interventions but it is so much broader than this.
As with any professional field, there will be practitioners out there who are/have misapplied early intensive behavioural interventions. For people who report their experiences as abusive I do not contest their experience and it is awful that this was their experience. We know some foolish services have pedalled this as a “cure” to autism, which is appalling. Equally we know a lot of “PBS services” do not use evidence based PBS with competent practitioners, and the PBS they provide is poor quality. From my perspective, this further strengthens the need for appropriately trained and regulated practitioners so as accountability can be upheld and practice is delivered to a code of conduct. It is not ok for unregulated, poorly qualified people to claim to deliver behavioural interventions, which if misapplied can be harmful. If they are regulated then the regulating body can police abusive practice and prevent it from continuing.
Trying to “cure” my autism is trying to deny who I am
The #actuallyautistic community see their autism as their identity. It is who they are. The notion that anyone is trying to “cure” autism is offensive because it is part of who they are. Aligned to the social model of disability, it is not their autism that is disabling but it is society not being accessible, and attitudes and approaches that are disabling. When a parent says something like “I wish I could take his autism away” this is seen as a direct attack on them and saying they want to eliminate who they are.
We cannot say whether someone else has a disability. It is totally for the person to decide whether they have a disability or not. Similarities can be seen to ex-servicemen who may have lost limbs but would deny that they are disabled. Autism in itself is not a disability. If the person feels that they are unable to do things because of their autism then they may class themselves as having a disability, but many people with autism would not agree their autism is disabling.
ABA is not a cure for autism. Any claims for a “cure” to autism should be sense checked for quackery. PBS uses the science of ABA to understand the function/purpose of behaviour and instead of simply being focussed on reducing behaviours that we find challenging (as some approaches to challenging behaviour do) PBS looks at the function instead and how we can increase skills to meet this purpose in a better way. We are only concerned with adding things to peoples lives, and those things must be important to that person.
We know better than anyone what every autistic person needs
This is possibly the most challenging aspect of the interactions on social media. I have seen parents being told that they know better than their parents what is right for their child as they are autistic and their parents are not.
We know that autism is experienced very differently by everyone who has it. We know that there is not one thing that works for everyone with autism. The lives and the experiences of someone who has an average or high intelligence, who verbally communicates, and has autism will be very different to someone who has a learning disability, communicates in alternative ways to using verbal words, and has autism. If you haven’t lived in their shoes then you cannot claim to speak for them.
The difference extends to the language used. The #actuallyautistic community generally prefer the term “autistic people” as they see their autism as a key part of their identity and see the “people first” movement as disempowering and supporting the view that autism is a problem. The learning disability community in general prefer the “people first” terminology and would use the language “people with autism”. This is to reflect that we see the person before we see their disability and all people should be treated equally. If you see autism as your identity and not a disability then you can see how the people first language can be offensive. Both approaches to language have their pros and cons and ultimately it is for the person to decide what they find respectful and empowering.
I have been the focus of extensive tweets from the #actuallyautistic community due to promoting quality PBS. This offends them as they see PBS as being the same thing as early intensive behavioural interventions. These interventions are frequently described as ABA, ABA is actually the name of the science that PBS is based on and does not describe any particular approach. ABA is seen as offensive to autism as there have been some foolish services that have tried to pedal ABA as a “cure” to autism. For them, trying to cure autism is trying to take away from them who they are.
This misunderstanding has led to me receiving extensive and accusatory comments, as many other practitioners and parents have received. I don’t think ignoring this is the answer, but there is limited point in attempting to explain the reality as this will not be listened to. On social media you may only see the latest tweet/post and not the whole conversation. It is likely you will see the characteristics of the responses I receive in direct response to this blog. If you see any tweets from anyone that seem out of character keep in mind that you may only be seeing the latest in a long, complex conversation.