Published in November 2023
Proponents of ABA seem to steer the narrative with a heavy hand, insisting that it is “the only evidence based practice” and that without it there is no hope for autistic children. Leaving aside the ableism inherent in that statement, I will say that there ARE alternatives, evidence based alternatives, that are not traumatising, that follow many principles of other therapeutic and educational approaches.
These alternatives are socially valid, as they are person-centred approaches. When the person is put in charge of defining the goals and outcomes, with support from family members or caregivers, the therapy or programme will have better success. Research on this phenomenon abounds, one example is given here. Although the alternatives may not have direct or indirect community input in an expressive sense, it may be that professionals using the alternative methods seek the testimony and values of the wider autistic community.
Dr Damian Milton argues that autistic people should be seen as experts in their own experience, while in other areas of healthcare autistic people are being consulted in the development of screening tools, in the wording and content of research studies and promotions of said studies (most recently the Autism Centre of Excellence at Cambridge consulted on their suicide prevention project). This can be done for ABA.
This piece about The Community School is a compelling argument for DIR (Developmental, Individual differences, Relationship-based approach) or Floortime as it is also known, and shows there is precedent for managing self-injurious behaviour, one of the most challenging things, with this approach. It is person-centred, involves parents as facilitators, and meets the criteria for social validity. It is based on the work of Professor Stanley Greenspan and Dr Serena Wieder.
RDI (Relationship Development Intervention) is another research-based alternative that was developed in the 1990s by Rachelle Sheeley and Steven Gutstein. Both these alternatives take a neurocognitive approach to personal and academic development that teaches skills which are transferrable, that are taught in a dynamic way which enables people to learn through interest rather than by what is imposed on them by an ABA practitioner.
RDI works with the autistic brain and with the person, creating intrinsic motivation for learning which reduces frustration and provides a hook for addressing behaviour that challenges (which is often a response to unmet needs). There is no external motivator/reinforcer, so it does not teach compliance, like ABA does, but teaches skills. ABA ignores internal and physical constructs (pain, thoughts, emotion) and teaches people to suppress these for the sake of others.
In determining models of support for autistic people, a person-led, not just person centred approach must be the driving factor. The lead should be taken from the ethos of the Credo of Support by Norman Kunc and Emma Van der Klift:
Part 4 looks at the future of ABA in the UK, and how this intervention may be changing for the better.
A CREDO FOR SUPPORT
Do Not see my disability as the problem.
Recognize that my disability is an attribute.
Do Not see my disability as a deficit.
It is you who see me as deviant and helpless.
Do Not try to fix me because I am not broken.
Support me. I can make my contribution to the community in my way.
Do Not see me as your client. I am your fellow citizen.
See me as your neighbour. Remember, none of us can be self-sufficient.
Do Not try to modify my behaviour. Be still & listen.
What you define as inappropriate may be my attempt to communicate with you in the only way I can.
Do Not try to change me, you have no right.
Help me learn what I want to know.
Do Not hide your uncertainty behind "professional" distance.
Be a person who listens, and does not take my struggle away from me by trying to make it all better.
Do Not use theories and strategies on me.
Be with me. And when we struggle with each other, let that give rise to self-reflection.
Do Not try to control me.
I have a right to my power as a person. What you call non-compliance or manipulation may actually be the only way I can exert some control over my life.
Do Not teach me to be obedient, submissive, and polite.
I need to feel entitled to say No if I am to protect myself.
Do Not be charitable towards me.
The last thing the world needs is another Jerry Lewis.
Be my ally against those who exploit me for their own gratification.
Do Not try to be my friend. I deserve more than that.
Get to know me. We may become friends.
Do Not help me, even it it does make you feel good.
Ask me if I need your help. Let me show you how you can best assist me.
Do not admire me.
A desire to live a full life does not warrant adoration.
Respect me, for respect presumes equity.
Do Not tell, correct, and lead.
Listen, Support, and Follow.
Do Not work on me.
Work with me.
Dedicated to the memory of Tracy Latimer 1995 © Norman Kunc and Emma Van der Klift
*Image credit: mine; one of the AGAPÉ sculptures by Anton Smit at Leonardslee Gardens, Sussex
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