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Parents of autistic children - ABA therapy

  • 28-06-2022 12:47pm
    Registered Users Posts: 1,494 ✭✭✭ JDD

    My five year old son was recently diagnosed as Level 1 autistic. We got him assessed privately and the psychology service recommended that we start ABA therapy.

    Now, I had read about ABA therapy before, and specifically the experiences of adult autistic people who had gone through ABA therapy as children in the 80s/90s/00s. I had thought that it had been sidelined as a therapy but the psychologist informed me that the manner in which the therapy is carried out has changed enormously over the past twenty years and it is still considered a central pillar of autism therapy. She said that nowadays the therapy does not focus on restricting what might have been perceived as negative behaviours (e.g. stimming, lack of eye contact etc) and focusses more on rewarding behaviours that will help the autistic child navigate a NT world - e.g. helping him deal with transitions more smoothly, help him instigate social contact and help him regulate strong emotions. She recommended started ABA therapy first, before commencing speech therapy or OT, as the skills he would learn in ABA would mean that the ST and OT will work more effectively.

    I took this away and thought, well, I'll have to do my own research on this. My son is due to start in JI in September, and deputy principal also remarked that ABA was still considered somewhat controversial. I also note that the ASIAM website notes that they are against ABA as an effective therapy.

    Has anyone engaged in this therapy with their children? What did you think? Any adult autistic people with experience of it? While I would normally be a person who just listen to the expert and go ahead with it, in this instance I'd rather get the opinion of actual autistic people and their parents over a private psychologist who's bottom line depends on the amount of therapy I buy from them.


  • Registered Users Posts: 947 ✭✭✭ DubCount

    For context, I'm the parent of an autistic (moderate level) adult.

    As the parent of someone with autism, you will come across lots of interventions that say they help. Each will have a range of parents/experts saying its the best thing that they could have done to help their child. ABA is the only intervention I have come across that has proven results scientifically (take x children, measure their IQ, levels of behavior, language level etc.. Give half the children ABA for 9 months, dont give the other half ABA. Remeasure and compare results. Publish results in a scientific journal so other people can repeat the test and review methodology etc.). ABA does work.

    From a personal point of view, I think ABA really worked very well in the early years. I reckon a lot of skills and abilities were developed because of ABA intervention.

    Just a word of caution. If you are going for ABA, try to get the program designed and overseen by a BCBA (Board Certified Behavior Analyst). There are lots of people who will say they "know ABA" or "have a lot of experience with ABA", but a BCBA is the only way to make sure you're dealing with someone who know what they are doing. I would say no ABA is better than bad ABA.

    Also to say, ABA is an overarching intervention. If you are doing PECS, you do PECS through ABA etc. The Department of Education are not a fan of ABA as an overarching intervention. They only see it as part of a cocktail of interventions. For this reason, it doesn't really have a follow through in schools, and getting school staff who genuinely have expertise in ABA is unusual.

    Good luck on your journey.

  • Registered Users Posts: 26,739 ✭✭✭✭ Wanderer78

    wouldnt touch it with a barge pole, chris packham's 'asperger's and me' documentary is well worth a watch, he does an aba segment in it, tis disturbing to me, being autistic myself!

    cbt is the preferred therapy for those of us on the spectrum, but im unsure at what age it is recommended to begin, just be aware, elements of the hse is extremely poor with its understanding of the disorder, and the whole process of assessment and treatment in ireland is the complete wild west, with all sorts of dubious practices out there doing so, some already actually struck off!

    id highly recommend tony Attwood's work, world renowned clinical psychologist, and with an adult son on the spectrum

    he does a regular questions and answers on this youtube channel

    swimming was one of my life saviors as a child, im truly grateful my parents persisted with it, apparently its common with those of us on the spectrum, so id highly recommend getting him into activities as such, to alleviate his elevated levels of anxiety, which will more than likely be amongst his most serious issues, and then of course, routine, routine, routine!

  • Registered Users Posts: 1,494 ✭✭✭ JDD

    Thanks you both so much for your responses. Wanderer, I watched the Chris Packham documentary yesterday. It was absolutely fascinating and I'm still thinking about it this morning. I'll certainly take a look at Tony Attwood's website.

    I don't want to "cure" my son's autism. Apart from the fact that it can't be cured, I think cure is a very emotive word. I would be very dubious about a therapy that basically teaches children to mask their autism. I don't want to teach him to look people in the eye or stop stimming. Masking will inevitably lead to severe mental health issues as they grow up.

    What I want is to reduce, as much as I can, any negative experiences he might have as a result of not having the necessary skills to thrive in an NT world. Of course I believe the better thing would be to change society's perception and understanding of autism, and make sure there are accommodations made for those who are neuro-diverse. But changing society is a slow old process, and that probably won't happen soon enough for my kid. So in the meantime I need something to help him understand danger (e.g. to look for cars before crossing a road, to stay on the footpath if a car is coming, and to hold hands with an adult before crossing the road), cope in small social groups, and transition from one task to another. He many never understand the need for these skills, but they are utterly essential. I don't actually need him to understand the reasons behind them at the moment, I just need him to follow my instructions in certain limited dangerous situations and learn some basic social rules (turn taking, asking someone if they are okay if they are upset) which I think will help when he starts school.

    I don't necessarily think ABA should be overarching. If there were some narrow goals that I wanted him to master perhaps ABA would be helpful in the short term? That said, I hadn't considered CBT and perhaps that might be the better option. ABA does strike me a little patronising, e.g. look someone in the eye, get a jelly, hold hands crossing the road, get a jelly. This isn't Pavlov's Dog we're dealing with here. These are little humans.

    Perhaps I have answered my own question.

  • Registered Users Posts: 26,739 ✭✭✭✭ Wanderer78

    yea, my knowledge on aba is extremely limited, but i can completely relate to Packham's reaction, as my own was similar, i just found it disturbing, as i was clearly one of those autistic kids, simply overwhelmed by life, largely due to my sensory issues, of which i still have, but have learned copying strategies, both positive and negative ones. the most likely issues your son will struggle with are the overwhelming anxiety general life creates, this is generally far greater than what nt's experience, and can be very draining, these eventually lead into more complex mental health issues during my life, the most painful being long term depressive episodes. thankfully im far better equipped in trying to deal with such issues, reaching out for help to qualified professionals was just critical, i truly should have done this at an earlier age, but i probably didnt understand how to, i probably was unable to appropriately communicate these issues to those around me.

    id definitely recommend keep trying him with various forms of exercise, this will help him greatly with dealing with his anxiety issues, dont force it of course, even though there was a little force and persistence from parents in regards this, im truly grateful they did, it truly works in maintaining functioning levels of anxiety.

    id definitely recommend checking out autism hang out on youtube, many parents write in looking for advice from attwood, and he does sometimes respond directly, with some truly great advice, he truly understands the disorder, theres definitely no harm in trying to get a direct response from attwood via the channel, noting, he just cant answer everyone's, but....

    think he mentioned some advice in regards school going kids with autism in his latest on the channel

  • Moderators, Category Moderators, Entertainment Moderators, Science, Health & Environment Moderators, Regional East Moderators Posts: 17,712 CMod ✭✭✭✭ The Black Oil

    IMO, go with your gut and what you feel is best for your child.

    There are people on Twitter who are quite vocal that ABA is abuse or abusive, so you'll see advocates for banning it and also some people who want to cancel a forthcoming ABA conference in Dublin. It can be very hard to be a small voice going against this tide because the statements that are out there can be very black and white. Personally, it doesn't right with me. I do know those who work in the area are aware of the feedback, some of the problems and are genuinely reflecting and trying to change things. At the same time, some of the anti-ABA sentiment seems built on misrepresentation, at least that's what I felt at a webinar last year. Co-production where autistic people are included in research and service design from the ground up is very slowly becoming the norm. Unfortunately, a lot of autism research is very biology heavy, rather than looking at services, quality of life, what people actually need, etc. It's a simple fact the world is far from equal for autistic people and yet they're asked to follow the NT one.

    Surprised to see CBT mentioned above as I've seen this slammed i.e. "doesn't work for autistic people" and also Tony Attwood - long though he is in this field.

    Cure - that word is synonymous with Autism Speaks and their ilk, a US organisation not terribly liked by the community and with good reason.

    Good luck.

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  • Registered Users Posts: 106 ✭✭ NeutralHandle

    We observed a clear negative impact on my son in his second year of playschool and they applied behavioral techniques that they thought would force him to have a different brain somehow.

    We took him out of playschool and his confidence came back, and he went back to being happy friendly boy he had been. He really liked his first year in playschool, where they didn't have him pegged as autistic and didnt apply some weird ideas, but he just had nice teachers who responded naturally to his needs.

    He has speech apraxia. Advising aba before speech therapy is just bonkers imo. It's such an obvious thing to address.

    I focus on developing his confidence through physical exercise and skills. Taught him to ride a bike at four and he likes to go fast on it and on his scooter and we play catch and things. Avoid noisy environments and blow off steam outside. Nurture kindness. His main thing is social so this helps because it makes him physically confident and capable.