Interviewed by Maithri Sivaraman, MSc, BCBA
Association for Science in Autism Treatment
It was a pleasure to talk with Jane McCready, campaign founder of ABA Access4ALL. Jane founded the ABA Access4All (ABAA4All) parent campaign in the UK in early 2014 to use PR, lobbying and the law to get ABA funded by the State for those who choose but can’t afford the services. She has done so much to speak-up and fight for better access to ABA services.
Maithri: Jane, can you share a bit about your family with our readers?
Jane: I’m a London-based mum and stepmum of four, age 55, and I live with my husband John and two of our children. Our handsome, happy son Johnny is severely autistic and learning disabled (you call it intellectually disabled in the US) plus also has Type 1 Diabetes and a congenital heart defect. I also have a beautiful, higher cognitively functioning stepdaughter – she’s a politics graduate with a great career and an independent life with her boyfriend. So I do see that the spectrum is a very wide one, hence I recently joined the leadership council of your US NCSA (National Council for Severe Autism). Prior to motherhood, I worked in banking and PR/marketing, for both British banks and Merrill Lynch. I’m also a Cambridge classics graduate and a qualified secondary school teacher (my specialist subjects are Latin and Ancient Greek).
Maithri: Tell us what led to the creation of ABAA4ALL.
Jane: After my son was diagnosed, I found that many of the therapies offered to him fell into two clear categories: bonkers, or sweet-but-ineffective. Another mum – to whom I am eternally grateful – recommended that I try applied behaviour analysis (ABA). “Oh no” said I, confidently, “for I have heard that it is nasty and turns kids into little robots”. Luckily for me she told me, in no uncertain terms, that I’d been sold a pup, and that ABA was the way to go. I also at that time read an inspiring book, “Let me hear your voice” authored by one of ASAT’s founders. I believed the book and that mum rather than the naysayers, who included of course, my cost-conscious local authority. My son immediately started to learn key life-enhancing skills – most notable amongst which were talking, and not hitting his own or his sister’s head when stressed about the least little thing.
But ABA was very hard to get financed by the state, so my husband and I had to beg, borrow and remortgage to pay for it in those early days. Only after we had done that for a year, building up an evidence base that ABA was getting results for our son over-and-above what the state “treatment as usual” had achieved, were we able to win state funding – with the help of an ace legal advocate. Since then, my son has continued to thrive with ABA, which the state has now kindly funded for the last 13 years.
But this sat uneasily with me. So basically, only those rich or fortunate enough to have the money to first prove its worth for their particular child could win state funding for ABA? The rest would be left with the bonkers or the sweet-but-ineffective?
And this in the UK, which prides itself on a free and equal standard of education and healthcare for all?
That’s why I started the campaign ‘ABA Access4All’ – to level up the playing field regarding state access to ABA – for those who choose it. The campaign is not seeking to force it on anyone who doesn’t want it – Lord knows there’s not enough capacity to go around as it is.
Maithri: What is its mission? What are your current projects?
Most recently ABAA4All has given feedback to the just-completed NHS study on the effectiveness and cost-effectiveness of Early Intensive Behavioural Intervention (EIBI), which will hopefully be published soon. We’ve been combating yet more misinformation in the media and online forums about ABA, while of course also enjoying the school holidays with our autistic kids! I am currently garnering consumer feedback on the newly-launched UK Society for Behaviour Analysis (UKSBA) Register of professionals, which marks a step-change for the Behaviour Analysis profession in the UK.
Maithri: How do you disseminate ABA and science-based treatments in the UK especially when anti-ABA sentiments exist?
Jane: I try and disseminate the good, honest messages about ABA via my well-used Facebook page, with 6500 followers, via Twitter (nasty place, but the stubborn bit of me refuses to get driven off there by a niche, anti-ABA neurodiversity crowd) and via the webpage created by my campaign co-Director Sarah Kaikini – www.abaa4all.com.
I’ve been in the press, and on TV/radio many times talking about my son’s good experience with ABA. I also lobby the UK’s charities and governmental agencies in person, or by submitting comments to very many NICE/NHS or educational autism studies. And we have brought successful legal action where local authorities have been operating unlawful blanket bans on ABA.
Most of all, though, it is mumpower: by sharing experiences across the UK, a mum who’s won ABA in, say, Oxford can help another mum across the country in Exeter – what worked, what didn’t work, what legal arguments were needed, what got said at Tribunal if it came to that. It’s the sweet spot where social media and the need for innovation in autism practice meet. As with most things in the autism world, it is mums who both lead the way and also take all the flak. I’m actually quite weary of the current fad for mum-bashing online – where any mum* who refers on Twitter et al to the benefits of ABA for their child, or who describes their child’s autism as severe, is besieged at once by a small but highly vociferous neurodiversity group, with threats, abuse and insults. I’m a tough old bird and have learned to handle it, with my trusty mute button at my side, but it’s unpleasant nonetheless. I think it’s high time we acknowledged that one autistic person is an expert only in their own autism, and can’t act as spokesperson for such a varied spectrum. They are certainly no expert on the needs or wants of a child in a completely different country, whom they’ve never even met.
*or dad, but frankly it’s usually mums as misogyny seems never far off in autism-land, from refrigerator mums right through to the current online abuse.
Maithri: What is the biggest challenge you face in your work and how do you prepare for this challenge?
Jane: The UK has traditionally been a fairly hostile environment for ABA, due to an unhealthy confluence of the needs of cost-cutting funders and the misinformation spread by the anti-ABA crowd. When you speak privately to the funders, they know darn well that ABA helps kids learn skills, but the anti-sentiment gives them good “air cover” for what’s essentially a cost-cutting agenda.
Maithri: What are the available evidence-based treatment options for families in the UK? Typically, how intense is the intervention? How do these families pay for intervention services?
Jane: The typical path for an autistic child in the UK, unless they can hang on for a decent-ish education in mainstream, tends to be fairly lacklustre “eclectic” special schools – which offer a mishmash of TEACCH (Treatment and Education of Autistic and Related Communication handicapped (sic) Children), bits and bobs of Speech And Language Therapy/Occupational Therapy (SALT/OT) and some homegrown ‘therapies’ such as Intensive Interaction (which appears to involve chasing the child around the room manically copying their stims, to what end no-one ever seems very sure).
My experience of such schools was that they were more like child-minding than education – particularly at the more severe end of the spectrum. There was no intensity or quality to the teaching. To me, it’s inverse discrimination: no one batted an eyelid when I expected a high calibre of teaching for my non-autistic daughter, but when autism enters the picture a few colourful beanbags and nursery rhymes are ok? Such education often results in poor outcomes for the children themselves in terms of needing lifelong care, when maybe more independent skills could have been taught via the toolbox of techniques offered by ABA.
This point was really driven home for me when my son developed Type 1 diabetes at age 10, meaning he needs five injections of insulin every day in order to stay alive. Despite the severity of both his autism and his learning disability, and despite an initial phobia of needles, his wonderful ABA school has taught him to do his own jabs. They are continuing to teach him skills of independence every day. He will never live fully independently, as he is too severe to be safe that way, but he will also hopefully never need incarcerating in a high-security “care home” due to unmitigated challenging behaviour. Had he still been lashing out, and given he’s now over 90kg and 6ft, how would we have coped at home? As it is, we plan for him always to live with us.
Maithri: How much has changed in the field since 2014 when you started ABAA4ALL?
Jane: I think there has been change. There are now many more ABA schools, most of which are rated “outstanding” by our education regulator – Office for Standards in Education (Ofsted). All of these are funded by the state, so access to ABA is becoming more democratised. Many other special schools are embracing ABA via in-house departments alongside traditional therapies like SALT and OT. The NHS is now a huge buyer of ABA/PBS services – though mainly as yet under the challenging behaviour mantle and for adults with autism and/or learning disabilities. There are many more businesses, clinics, charities and affordable “Focus” Saturday clubs springing up offering ABA, and the number of BCBAs has nearly tripled over the period. We also have 5 universities offering Masters courses in ABA, producing hundreds more great professionals. And our major autism charities and care organisations are employing ABA professionals to teach autistic children key skills. Recently, the UK Society for Behaviour Analysis (UKSBA) on whose board I sit as consumer member, has launched a ground-breaking professional register. Under the aegis of the Professional Standards Authority, a nationally recognised regulator accountable to our Parliament, this will turbocharge consumer protection and therefore the quality and status of the ABA profession in the UK: enabling it to take its rightful place alongside other regulated UK professions. No one really has the numbers for how many kids are now accessing ABA, it is hard to get a grip on, but I think it’s undoubtedly gone up.
Maithri: There are so many fad treatments available for autism, and families looking for clear guidance face a huge challenge. Is this the case in the UK?
Jane: Yes, it’s everywhere. Speaking for myself, I set store by nothing except the effective teaching method that is ABA – although I do find that the SALT and OT offered in conjunction with ABA at my son’s school now make more sense too. My boy has every vaccination going to protect him – particularly important given his medical issues – and I feed him a full, healthy diet. I am very cynical and disheartened by many of the total scams masquerading as “treatments” for autism, particularly Facilitated Communication (FC) and Rapid Prompting Method (RPM) or some of the insane blood or bleach “products”. The work you do to expose dangerous or ludicrous treatments is great, and a similar role is played by our UK Research Autism charity. I have to say that I find a lot of what’s called “sensory integration therapy” to be fairly non evidence-based, and OT has been at its best for my boy when going back to its roots, teaching our boy actual “occupational” skills such as using a pen to write, or a knife to cut meat/cheese.
Maithri: Considering the limited availability of evidence-based services, there seems to be a wide demand-supply gap. What is the advice you would like to give for newly diagnosed parents in your region who have minimum access to such services?
Jane: Check out our web page (https://www.abaa4all.com/aba-map) for tips and a map of where to find good (free or affordable) ABA services, plus research studies and accounts from families or autistic people themselves of how ABA has helped them. It is more of a struggle for the mums to choose this path, unless they are lucky enough to live in an area where the local state school just naturally offers ABA, but it’s worth it when you see your child making progress towards a better quality of life.
Maithri: What is your vision for behavior analysis and autism intervention in the UK and for ABAA4ALL?
Jane: I want high quality professional ABA to become just part of the mainstream, embedded in state schools, nurseries and homes/centres, so that all kids/adults who need it can get access to it – regardless of money or postcode.
Maithri: As someone who has worked closely with professionals, parent groups and academicians, you have likely encountered individuals who promote unsubstantiated treatments. What advice would you like to provide for professionals striving to disseminate scientific treatments but find themselves in a minority?
Jane: I think ABA faces an ongoing battle to amplify the positive (real) messages over the top of the historic/‘abusive’ picture painted of ABA online by the neurodiversity crew. The problem is that they are often younger, better at using online networks like Twitter, and one bad blog can get retweeted thousands of times – often by folk who have zero experience of ABA, but want to follow the herd. In some neurodiversity circles, hating on ABA has become almost a price of entry, a sine qua non of ‘membership’. It is particularly sad to see this: a relatively privileged small segment of the spectrum raining on the parade of more severely autistic children, for whom ABA can be a godsend. The PR wars are exacerbated as ABA professionals aren’t allowed to talk about their clients or use case studies. The battleground becomes an uneven one. We parents who see the value of ABA, who aren’t paid by anyone (rather the opposite!) and who have tough hides can step into the fray, and recommend ABA to others – as it was recommended to me by that wonderful other mum 13 years ago. We mums also speak plain English, whereas ABA lingo (e.g., mands, negative reinforcement, operants) serves to distance people, make ABA seem ‘weird’ and ‘other’. (Compare the softy-nicey language used by so many other autism therapies). If I were a PR advising the ABA industry, I’d say – drop a lot of the jargon, focus on the improved quality of life for your clients, maybe lobby to change the BACB’s stringent ‘no case study’ rules – as your hands are tied behind your back. Personally, I will no longer tolerate to be called an ‘abuser’ by some twenty-something total stranger online or even in real life, and fight back a lot, but it’s pretty unpleasant out there.
To parents who’ve been inundated with offers of autism therapies, I’d say: stick with science. My boy needs ABA, exercise (he loves swimming), a healthy diet, and high expectations rather than a “can’t-do” approach. We live a good, full life with my son – today he’s been in the sea surfing, out to a café for lunch and he now plans a trip to the shops to buy some toys/sweets. Without ABA, the picture would have been very different.
Jane, representing ASAT, I would like to thank you for sharing all your experiences and information about ABA treatment for autism in the UK. ABA Access4ALL has been instrumental in lobbying for accessible and affordable ABA services for families in the UK. I was truly inspired by your work on disseminating information about ABA internationally.
Citation for this article:
Sivaraman, M. (2019). An interview with Jane McCready, ABAAccess4ALL. Science in Autism Treatment, 16(9).