Recently there has been a call for public comment for Autism South Africa to take a stance for or against a certain type of intervention. As a national body supporting thousands of families and people on the spectrum I feel that this is a question we cannot ignore, but it goes beyond whether A;SA should remain silent or not. It goes much deeper as families grapple with the choices of how to help their child/husband/wife/etc to provide them the best opportunity to live a happy and fulfilled life. The vision of A;SA is that all people with autism enjoy all rights and opportunities to meet their needs and fulfil their potentials throughout their lives as equal members of their families and communities. This is a challenging vision and one which I (personally) hope to see achieved within my lifetime. As an outgoing director, this is a blog which I hope to provide guidance for individuals on the spectrum as well as their families when deciding on which therapies or interventions to try.
I do believe it is important that everyone needs to acknowledge and outright state their own personal biases, so here are mine:
- I am a Speech Therapist by profession, so for me Communication would always be my main priority;
- I have just finished my Masters Degree in Augmentative and Alternative Communication and we were taught that interventions require an academic research base before we can definitively say that ‘it works’ for most people;
- I truly believe that there is no one size fits all therapy for anyone, especially those on the autism spectrum;
- I truly am passionate about assisting autistic individuals and have a special place in my heart for early intervention;
- My research dissertation was entitled “The involvement of persons with ASD in AAC research: A scoping review”, supervised by two individuals whom I have the greatest respect for, (Prof. S. Dada and Dr A. Samuels). What the complicated title actually meant was that I looked at all available, peer-reviewed AAC (Augmentative and Alternative Communication) research and examined how many of the papers truly considered the opinions of those on the spectrum. The short answer – none… because the individuals in the research did not have a robust communication system to voice their opinions. So the next best thing was to provide research participants with a fixed set of choices of communication systems and see which one they reached for first. Now, if you are hungry and I offer you a choice of a banana or an apple, but you really actually want an orange (but that isn’t part of the choice I’m giving you) – what will you do? You’ll choose the option to satisfy your hunger whether a banana or apple, even though you really want an orange. So, my bias is that my research showed that researchers, although well-meaning, still exclude the voices of those on the spectrum.
- I listen, and listen very carefully to those who have autism and express their opinions to me. What I have come to realise however is that those with voices to express their opinions and experiences are not really representative of all and this is an important aspect to keep in mind. Also, the opinions that reach my attention as director of Autism South Africa are more than often negative, accusatory ones. Now, I know that this is part of the job, and happy people tend to rather continue with their lives happily than report their happiness. I’m not sure if that makes sense, but what I am trying to say is that if you are happy it is less likely that you will reach out to others on social media or personally to tell them that you’re happy. However, if you are frustrated by the system, by not being able to find a school for your child, by not being able to find or keep work, by not being able to be safe, by feeling that no-one is listening to you – these are the stories of the people that we hear and support on a daily basis. So there is a negative bias there that I am fully aware of.
Okay, that’s out in the open, so how do you choose a therapy/intervention?
I always say to families: ‘FIRST, do no harm’. If there is ANY chance of harm, then NO, stay away from it. Now, how do you know whether something is going to cause harm, because even the most innocuous situations such as relationships or shopping or going to visit a friend has the potential to be harmful, doesn’t it? One stands the risk of having your heart broken, of someone being rude to you, of you feeling overwhelmed and having a melt-down. But, the call is not to dissect every aspect of life, the call is to take a stance on a certain type of intervention.
So the first question you need to ask yourself is “How do I tell what a good therapy/intervention is and what a bad one is?”. So here are some principles to consider:
|Possibly good – look into it a bit more|
|The intervention presumes competence|
|The intervention listens and respects ALL autistic perspectives (not just their own)|
|The intervention shows evidence that they have partnerships with autistic adults who have either advised on the methodology, or been through it themselves|
|The intervention provides access to alternative communication appropriate for the individual|
|The intervention considers and addresses sensory needs – modulation and regulation|
|The intervention shows respect for autistic thinking|
|Parents are empowered by the interventions|
|Intervention builds on the strengths of an individual (not a list of their deficits)|
|Interventions which are naturalistic or regular routine based e.g. take advantage of the learning opportunity whilst brushing teeth|
|Interventions that involve parents as critical members of the team|
|Helpful supports available such as Speech Therapy, Occupational Therapy, Psychology|
|Intervention is goal directed – which means there is a purpose to the intervention|
|Most definitely BAD – stay away!|
|Any and ALL forms of abuse against an autistic person, including the use of punishment as a dissuader/negative reinforcer|
|Any use of aggression|
|Torture or shock therapy|
|Any claim that autism can be cured or reversed.|
|Exorbitant fees for interventions|
|Any intervention that lays guilt on the autistic individual or their family for any reason|
|Interventions that discourage the attendance of a school (whether public, private or home schooling) and rather to just do hours and hours of intervention.|
|Any intervention that encourages one to sell their house or assets in order to afford the intervention.|
|Interventions that discourage parents to sit in on the session in therapy room.|
|Any claim to be a miracle cure|
|Intervention ignores signs of distress such as crying, shouting or lashing out|
|Interventions that tie a child to anything (e.g. chair)|
|Any claim to make an autistic child ‘normal’ (What is normal?)|
|Any type of bullying tactic whether on social media or face to face that tries to persuade or guilt families into believing a certain way|
A;SA as an organisation recognises that there are many different perspectives on autism and how to support autistic people. We live in a country where resources and experiences are in short supply, and therefore also advocate for services that are accessible and viable for families and autistic people.
My ‘go-to’ site is Research Autism as they list many therapies and interventions and the amount and quality of evidence base that backs them, you can find that here: http://www.researchautism.net/autism-interventions/our-evaluations-interventions
They are also pretty good at updating their list, so to me has been very useful. Their opinion on ABA for instance… Unable to rate. You can find more information here on why: http://www.researchautism.net/interventions/120/applied-behaviour-analysis-and-autism
Their words: ” In addition, if any type of ABA is undertaken, it is important to consider any benefits against the possible impact on the child (in terms of the intensity and possible stress of the intervention) and on the families (in terms of time, finances, organisation, and effects on siblings).” Their ultimate recommendation is that more research is needed in regards to long term effects, comparative studies, fidelity, identifying those who would benefit and specify that any future research needs to involve people on the autism spectrum, including non-speaking individuals.
In comparison, when examining the research surrounding Hyperbaric Therapy and Autism, the results are strongly negative without further research being recommended (http://www.researchautism.net/interventions/67/hyperbaric-therapy-and-autism)
I’d like to quote autistic researcher Damian Milton, from his 2014 article titled, “So what exactly are autism interventions intervening with?” Good Autism Practice, 15 (2): “Consensus in this field is about as likely as having a sustained political consensus between all political interest groups, from fascists to communists. The reason such as consensus is not possible is because the debates are largely theoretical and ideological”.
What I have realised over my 6 years as National Director of A;SA, is that people are motivated by very different things. People tend to cite research, arguments and anecdotal evidence that supports their own stance. I have tried to remain as objective and non-emotional as possible when visiting different schools and centres and have been eye-witness to the very positive results and the fun the children have at the Centre E for instance. I have also been disturbed at another centre (let’s call them Centre S) where they children remain isolated from one another and are subjected to hours of one on one therapy with an adult and no exposure to social interactions or fun. I look at the happiness levels of the children either skipping in with joy to Centre E or a total lack of joy at Centre S and I make my own opinion and decision not to refer to the latter.
No matter what, we as an organisation are faced with families desperate for support and services and we too are just as frustrated by the system that has let them down. I always advice parents to go to potential centres or schools or interventions themselves, don’t listen to the supporters or nay-sayers, go for yourself and measure with your heart. Trust your gut. My gut always says to me to follow the joy.
So this, is a very long response to a very short question regarding whether A;SA should remain silent to abuse. My answer is no. We will never remain silent in the face of harm and abuse.
If anyone is aware of this happening, I strongly recommend approaching the police and taking it further. As an organisation we cannot act on hearsay. Please go ahead and let the courts decide whether an intervention is a violation of any human right.
I know that a blog such as this opens me up as a target and critique on a personal level, but I’m okay with that. There is no way to make every single person happy and I’m at peace with that.
I do hope that one day peace is found for others who need it.