You might hear a myth that "the autistic community" is against ABA. This is misleading and involves one group on the autism spectrum seeking to speak for all. It's often a reference to a higher cognitively functioning and articulate niche group online (level 1 per the DSMV severity guide) and fails to represent the voices and perspectives of the 30-50% on the autism spectrum who are more severely impacted (at level 3). Autistic people at level 3 for support needs may have a learning disability as well and may remain non- or minimally-verbal for life. For this more severely autistic group, parents and carers are their voices and lifelong advocates. But even amongst level 1 autists, there is no unitary approved position on ABA. The accounts below are from autistic self advocates who can blog about the positive impact ABA has had for them personally, or for their own autistic children. Due to online bullying from anti-ABA groups, some interviewees have chosen to be anonymous. UK contributors tend to be younger, reflecting ABA's shorter history in the UK thus far.
Craig Rigden, autistic dad to autistic kids
"I'm Autistic: this is why I chose Applied Behavioural Analysis for my 2 children with ASD". Canadian Craig, who's a father to two autistic kids and himself autistic, describes how ABA helps his children learn. Read it here.
Julie Panneton, Canada
Autistic adult Julie Panneton, now in her mid-50s, talks about how early ABA therapy helped her in so many areas of life, leading to a successful career at one of the Big Four accountancy firms, Deloitte. She argues for much wider availability of ABA and other therapies for autistic kids in Canada. Julie’s must be one of the strongest voices yet for ABA: "I believe the most important thing I learnt from ABA therapy was that I can adapt to new circumstances" - here
Eileen Lamb, an autistic mum to a severely autistic child
Mum and author Eileen, herself autistic, writes regularly about how ABA is helping her more severely autistic son to learn life skills.
She also writes here about the dangers of the neurodiversity movement, and its stance on both ABA and severe autism. Eileen is French but now living in the US, and has her own website theautismcafe.com. See Eileen's blog here.
Temple Grandin, a renowned autistic professor
ABAA4ALL founder Jane McCready took part in a 2016 webchat with Temple Grandin, a notable figure in autism and a professor in animal science, who has written many books about her own autistic experiences and was the subject of the 2010 film Temple Grandin, starring Claire Danes. Here is what she has to say about her own upbringing:
Philip Lerner, mathematics student
Canadian Philip was diagnosed with Autism Spectrum Disorder at 18 months old and started ABA at age two. He's now studying mathematics at university. His blog post is entitled How ABA Saved My Life and he says "my experience has been completely positive and I would recommend it to any parents of autistic children". Read it here.
Brian Middleton, an autistic special needs teacher now training in ABA
Brian has been a teacher in the US since 2012 and, in his own words, says "I am autistic and I love ABA". He talks about the "strange lie" that the entire autism community hates ABA and how "this little lie" is responsible for preventing children from getting the ABA help they need. His blog can be read here
Anonymous 15-year-old autistic mainstream pupil
At a UK ABA event in September 2018, a video was shown of a young autistic man talking about how ABA helped him with skills such as talking and socialising. He is such a lovely sparky chap, now at mainstream school and hoping for a career in TV or film, perhaps at the British Board of Film Classification. The Harry Potter series is a firm favourite of his. Sadly the autism world online is not always a kind one, so here at ABAA4ALL we are transcribing what he said on the video anonymously. But we think his words are powerful testament to the ABA that helped to improve his quality of life right here in the UK. With thanks to him and his mum.
"I am 15 years old and I currently go to school in (mainstream secondary). When I was two, I was diagnosed with autism, I was put on the spectrum. At that age - I didn’t know this at the time, but later discovered - I had gone mute. When I did some research it was what they call “regressing” which was where I just went completely mute, I didn’t say a word, whereas I had been speaking until I was about one and a half – but then I just stopped.
"I went to a school - it is an ABA school - and through a long time of signing I began knowing again how to speak, and I sort of trained my mind back through the ABA therapy sessions that they were doing. So that enabled me to move to a mainstream school. Through that school, I did a whole range of things - I did various clubs, I did a comedy club with my friends. In Year 6 there was about 11 of us looking after the garden at our school.
"I mean I should have struggled with socialising with people, but through practice I actually don’t struggle with it so much. I quite like talking to people. The school was really good at helping me to improve my social skills as a whole really. I began making a few friends – a few became a dozen - now I know quite a few people that I feel safe and comfortable talking to and calling my friends.
"I’ve always liked getting involved in activities and stuff, so after school I did Scouts, and I managed to get my Chief Scout’s Gold Award which was really good. I do my school’s Book Club, which basically involves me reading books, reviewing them, talking to people about them - and through Book Club I volunteered with the librarian to help plan events for the library. Through school, despite having a social condition, I almost feel I have overcome a lot of social difficulties throughout my life.
"In the future I’d really like to work in something to do with the film or television industry. For example, I am thinking of the British School of film classification – which age rates films – 18, 15, 12 – because I’m really interested in talking about films with my friends and writing about films. My all-time favourite is probably one of the Harry Potter films because I feel like they have something for everyone: I love how as the series/characters get older, the films get darker and more mature as well. And I like that it gets scarier as it gets older as well, but they don’t lose what made the original series so special – the friendship between the three characters - which is why I got into them in the first place.
"I shouldn’t have really been able to cycle like I do – cycling should be a complete nightmare, co-ordination wise, trying to figure out where you are, oncoming traffic etc – they all are things that seem quite difficult. But through practice and riding my bike with my Dad I’ve been able do quite well at it. I have done a few events: I did a Sky bike ride which was about 10 miles. And recently I did a 21-mile cycle race – they called it a Marathon even though it wasn’t a Marathon (26.2 miles is a Marathon - I was 5.2 miles short!). But let’s call it a Marathon. The first year I tried it, I fell 14 miles along the way - it was really annoying as I’d completed two thirds of it and then there was this hill – and - boom! So this year I made sure I clutched onto the brakes as hard as I could while still actually cycling and I feel like the effort and perseverance got me to 21 miles.
[Voiceover: What would you say to parents?]
"My message to parents would be that having autism is not all bad. For example - I think this is common in autism, not entirely sure - sometimes I can be a bit blunt in how I speak. I don’t intend to say the things that come out of my mouth, but I don’t realise they are seen as rude. Particularly for parents who’ll look at things in a completely different way. If your child has a diagnosis, you will have to work to help your child, but it’s exciting to look at things from their perspective. Just keep trying when it gets difficult is what I’d say.
"I was originally really unsocial, I didn’t like being independent, I didn’t like meeting new people, going to new environments. Pantomimes in particular, because of all the sensory stuff going on in the theatre. I remember running out of a pantomime crying because of this green phantomesque figure – uugh!
"As time went on and through practice and through perseverance I managed to be more social, go through more environments that I didn’t think I would like. I managed to talk to loads of people on a daily basis. And it’s not all a bad thing, you get new experiences and new perspectives on the world. Well, now I am actually surprised by how much I do. I go to the shopping centre with my friends, I talk to people on Facetime and Skype. And I also like going to my friends’ houses for parties and social gatherings, watching Netflix with them, listening to music... It doesn’t feel like a gloomy, unapproachable place any more. I now more than ever, through perseverance and through effort, fit in really well.
[Photos shown with friends and at parties, caption: Recently, he joined six friends on an independent day trip out to the seaside – something many would never have thought possible.]
[Voiceover: do you know any jokes from the Comedy club that you ran? Let's end the talk with a joke]
"Ok so... I decided to sell my hoover the other day... It was just gathering dust! [laughs]"
Anonymous A-level Student
Here, a young UK autistic man, articulate and sparky, attests to how he felt about ABA and how it helped him in mainstream school, where he’s now taking A-level qualifications. The interview first appeared on the Speak Easy ABA WhatsApp group run by veteran London ABA professional Toks Adesanya (pictured below).
Toks: What’s your name?
Toks: Describe yourself
Student: I’m a social chameleon
Toks:Are you Autistic?
Toks: How did you find out?
Student: In Year 7 my friend told me to try and be normal. I said, I can’t.
I told my mum and she said you have autism - go and look it up. I did.
It described me perfectly
Toks: What is ABA?
Student: I don’t know
Toks: Can you remember people coming to your house to play and teach you?
Toks: We were ABA tutors. Your Mum and Dad started an ABA programme
for you back in 2004.
Toks: What ABA tutors can you remember? X - in school and home. Can you
remember the names of the others? There was also X, Shaggy and Miss Y
(laughs - I think he liked Miss Y 😜)
Toks: Who was your first tutor?
Toks: It was actually me
Student: Oh - you taught me that Mr Clickey Cane song
Toks: Yes (laughing) What’s your earliest memory from school?
Student: [school name]
Toks: Yeah, can you remember being in the reception class at [school name] when you were nearly 4?
Toks: They wanted to send you to a special school which your mum accepted. I told her to keep you in a mainstream school
Toks: What was school like?
Student: I liked reception class the best cos I played with toys!
Toks: Any other good memories?
Student: I always had TAs to support me. In year 4 I started writing stories and wrote a little book with Miss Y's help
Toks: Did you have any bad experiences in primary school?
Student: Yes - I kept getting told to concentrate and focus which was really hard for me! I remember screaming in class once when I got stressed out!
Toks: Who were your best class teachers?
Student: I can’t really remember. There was a TA called Miss Z I think, she was nice. Lots of people tried to help me.
Toks: Do you remember my visits?
Toks: Do you remember the small group social skills lessons?
Student: No, not really
Toks: Do you know what stimming is?
Toks: What stims did you do?
Student: I did made funny voices and sounds
Toks: Why did you stim?
Student: Not sure - just part of who I am I guess
Toks: Did you have any friends in primary school?
Student: Probably only D - he could relate to me quite well.
Toks: What were break times like?
Student: Ok, I never played football so would often play by myself playing with toys.
Toks: I think you had a playground buddy sometimes?
Student: Yeah, maybe
Toks: What was secondary school like?
Student: Year 7 and Year 8 were hard. People were constantly telling me I was weird. I didn’t care. I definitely got bullied. Sometimes I would stim on purpose!
Toks: Do you remember my advice to you if the stims in your head got to much?
Student: Yeah, you said make an excuse to walk away. It didn’t work for long cos the teacher wouldn’t let me leave the classroom. I stimmed a lot - made noises and doodled a lot with my pen! A girl called C always made fun of me!
Toks: Your eye contact is perfect now, but even when you were eight it wasn’t great. Did you know that?
Student: Not really
Toks: You’re also very articulate now but when you were nearly six you found it hard to reciprocate greetings. I would say "Hello [name]" and you would repeat it back
Toks: Did you ever want to be normal?
Toks: I remember when you were 15, you said you never wanna be a “cool normal person”
Student: Yeah that was my 14 year old self
Toks: Do you still stim?
Student: In my bedroom - talking to myself mainly
Toks: What’s the plan after A-levels?
Student: Take a year off and work - work on some computer projects
Toks: Cool. Do you think it’s ok for autistic kids to have these ABA programmes to improve their lives like you.
Student: To a large extent - Yes
Toks: Are there things that you think you could improve about yourself?
Student: I should try to be friends but often can’t be bothered. You and my family want me to be more sociable. Like you said - step outside my comfort zone (laughs)
Toks: You like going on long walk so maybe we go on a hike!?
Toks: Can you see yourself being married and having a job?
Toks: You really like Japan animation, art - you’re learning the language and want to go there?
Student: Yes Yes (big smile)
Toks: Maybe your wife will be Japanese?
Student: (laughs and smiles)
Toks: Thanks for the interview
Student: No problem
Mr K, aged 27, is autistic and works in a theatre
This interview just ran on the ‘Speak Easy’ ABA WhatsApp group run by London legend and ABA professional Toks Adesanya (pictured here with Mr K). Mr K now works at a top theatre, did so well with ABA and talks here about how it helped. His family were pioneers, one of the first ever to win ABA in the UK at tribunal! Toks gives some background information before the interview:
Mr K is a 27-year-old Autistic man. He was educated on a full-time ABA program (30+ hours per week) between age 3 and 12 years. He is fully conversational, with a great personality and vocabulary. I’ve known him since he was about 10-11 years old. He was originally educated on a Lovass (traditional table-based) style ABA program before switching to Verbal Behaviour (Manding+NET) ABA after 3 years.
At the start of the program he only had a handful of words which were unclear. He attended a mainstream school with ABA shadows until age 11. Then he went to “special needs” secondary school. The interview lasted around 35 minutes. He is superchatty, so for some bits I’ve shortened or paraphrased his replies. I felt he answered most questions well and to his best ability. Mr K's mother was also in attendance.
Q: Describe yourself in a few words
I’m funny, smart, clever, (very handsome too says Mum – he agrees). I’ve been Autistic since I was 3 years old.
Q: How did you find out you were Autistic?
[He wasn’t sure]. Mum reminds him – “Remember in [primary school] I told you if people are getting annoyed with you just say “sorry I’m Autistic”. He says, Yes.
Q: Did children find you annoying or weird at school?
Yes, sometimes, especially a boy called Mustapha (now Facebook friends)
Coz I would repeat things a lot and wind him up sometimes.
Q: Tell me some good things and not so good things about being Autistic?
My vocabulary is good, I have a great memory. I know what’s wrong and what is right.
However, I’m not very good with money - knowing how much change to give etc.
When I was younger I found times tables hard.
Q: Can you remember being on an ABA program?
Yes, it started when I was 3. My first tutor was Anita (Irish girl she was very tall).
Q: Can you remember any of the programs you did?
He couldn’t, but remembers the phrase “put with same” (we all laugh)
Q: Why do you think your parents put you on an ABA program?
To help my speech and my learning, to understand things better, to speak properly.
Q: What can you remember about the ABA sessions?
(Like I said, he couldn’t remember specific programs, but remembered all tutors by name. Remembered Steve Mcqueen teaching him to ride his bike, rollerskating and playing video games.
Q: What were your ABA tutors like?
They were nice. He names them all, even the strict one. He remembers being shadowed at school.
Q: What was school like?
It was good. Some teachers were firm, some were nice.
Q: What things did you get told off for?
I laughed sometimes when people were getting told off. I once got in trouble for turning on the fire alarm.
Q: Were the kids nice to you? Did anyone call you weird?
School was good… I had friends and I got on with most kids except a boy called Mustapha who I seemed to annoy. I can't remember being called names. It helped having shadows so he wasn’t bullied says Mum 🤗
Q: What was the most important thing ABA did for you?
ABA helped me to learn, to repeat things to get better and to speak really well.
Q: Did anyone say ABA was bad?
Q: Why didn’t your brother have ABA?
Coz hes not Autistic and didn’t need it. Goes on to explain he wasn’t as academic as his brother so couldn’t go to university which made him a bit jealous.
Q: What things have you found hard?
Starting conversations used to be hard (I tell him I agree, especially when I first knew him, but now he's an expert – we laugh).
Q: What does stimming mean?
Didn’t know so me and Mum explain.
He admits to talking to himself sometimes and in the past repeating questions even when he knows the answer.
Q: Are you glad you had ABA and should other parents do it for their ASD children?
Yes it will help children to speak and learn – they must repeat.
Q: How was mainstream different from special school?
It was easier at special school and I didn’t have school shadows (mum didn't think he improved much academically once ABA was dropped, but he could write and read well.
Q: Who was your first ever friend?
Enrico (also his tutor).
Q: Who were your first friends at school?
He names a few children.
Q: Who are the best people at coping with your autism?
My mum and the ABA tutors. Dad is not so patient.
Q: Are all Autistic people the same?
No, we all have different abiltiies. Felix is Aspergers - he's great at maths, but he's not as humourous as me.
Q: What do you do now?
Works at a theatre and at my old secondary school as a classroom assistant. I like meeting up for dinners, going to the gym and watching Eastenders.
And you love Facebook I chip in 😉
Q: What are your plans for the future?
Wants to go on a safari and travel to Africa and Egypt and work with homeless people.
Q: Where there anything bad about ABA?
Q: What should all ABA professionals remember?
Q: Mum, what would you have done differently if you went back 24 years ago with Mr K?
I would've started homeopathy with him much earlier. I believed it really helped.
Anonymous autistic man training to be an ABA therapist
Ben (name and locations changed to protect identity) is 30 years old and has just started training in the ABA field in America. We asked this lovely intelligent autistic man for an interview. Here's what he had to say....
ABAA4ALL: You’ve just started out as an ABA therapist? How is it going?
Ben: Being an RBT was tough at first, but I passed the competency and RBT test the first time. For the first month we mostly just studied. The [complexity of the] RBT test frightened some other trainees, but I took about 140 pages of notes on my laptop, sometimes from morning until late at night. I passed both exams the first time. I was a teacher or substitute teacher from 2015 to 2018 and already had a teaching license in my home state. The RBT exam and Pedagogy exam were both by Pearson, so I knew the general structure. The last two weeks as a novel RBT have had some tough moments, but already many things have improved. I don't feel any different from anyone else. My bosses have routinely complimented me for always seeking feedback. I also feel like a ninja because I can work with clients while watching their movement for impending chaos.
ABAA4ALL: What made you decide you wanted to be an ABA therapist?
Ben: I always wanted to help people. In school I often helped peers who struggled with being in a new school, being bullied etc, and even in high school I sometimes helped peers who struggled with relationship problems, were victims of some form of abuse and so on. I was bullied from elementary school through high school. In 4th grade I had a dream that this bully's face had grown by several feet and was looking at me through my bedroom window. I eventually realised that bullies only bother you if you let them get to your head. He was also very poor and did not always eat. Then I had many nightmares after 9/11, in which planes were headed for my bedroom. But finally in 2002, I could change the size of the airplanes until they were only a foot across, and then I could walk outside, catch the tiny plane as it fell and could let it land in the driveway safely. Then I would mail the tiny planes to the XXX International Airport where the police could restore the plane and occupants to a normal size. If I could control my dreams, I would be better off. I was a successful member of College Mentors for Kids during the last two years of undergraduate college, but even in college I faced some barriers from time to time to continuing as a student, and generally growing as a person. The second school I attended was very small, with about 1,000 students in the heart of a small town south of where I grew up and still live. While there, I wanted to take part in Best Buddies, but I was told that I could not be a mentor due to having a disability. I thought that was ridiculous and called the main XXX branch downtown. They sent a representative who essentially told me the same thing again. That was disappointing.
People would say I had a knack for learning things about people that they didn't otherwise want to share. They said it was a curse, but I knew it was a blessing. After college I dated a girl who became an ABA therapist. We are still really good friends. Then I found that the subject I wanted to teach in school (music) is not nearly as important as sports like football and basketball here in XXX, except in ritzy towns like BBB. I enjoy living in XXX, but this, along with teaching 30 kids at a time, all contributed to my eventually applying for the job I have today. I still may teach again, or pursue a Master's degree in Music Education or ABA.
ABAA4ALL: When did you receive a diagnosis of autism?
Ben: I was tested as a toddler, in kindergarten, and in 2nd grade, by a leading children's hospital in XXX. Nothing was found at that time. I was small and skinny, and my vision was poor. As a toddler I was afraid of the dome light in my parent's car. It looked like lightning to me. I had little depth perception until I had unlined bifocals in 3rd grade. I could not see into my desk when my elementary school teachers wanted me to work on assignments before that time. I could now see what was beyond or between the trees in our backyard. I was an excellent student through elementary and middle school, even during some mental issues at age 12. I finally admitted this while struggling academically in high school, and at age 16, was found to have mild autism, then known as Asperger's Syndrome. It relieved me that this was something which wasn't my fault. I also believe that God helped me to receive the courage to explain my troubles. I first talked with a priest about them. He encouraged me not to continue being depressed and not to give up. He also encouraged me to focus on deepening my Catholic faith, since I had only been Catholic for a few years. All that helped me; as a young boy I was afraid of God because I interpreted the fear of the Lord literally. But since I converted to Roman Catholicism, God helped my priorities to begin shifting in a more positive direction, even just in terms of my outlook on life.
In high school, I sought the advice of another Catholic priest; the other priest had Alzheimer's and had to retire, during Confession. The priest was at my high school from time to time because it was a parochial school, so we had church services and priests heard confessions during Lent, which was really cool. He told me to talk to a psychiatrist, but I didn't have the courage yet. I was upset with him because I figured that a priest should help me instead of suggesting that I see a psychiatrist. That was all before my autism was discovered. My grades improved dramatically during Junior year, but Senior year I just didn't care. I barely graduated, and still struggled from 2007 graduation until the Fall of 2010, when I transferred to college number 3. But I knew that then I had the chance to be the student I once was. And then I graduated, a bit later than some, but from a better school than I'd been enrolled in prior, in 2013, with a healthy B GPA; still that 3rd school. I was a music major. My grades were strong during the first year-and-a-half, but fell a bit during Junior and Senior years. During senior year, I just got lazy, and had two Cs - I didn't like being a 5th-year student. I might have had better than a 3.5 if I hadn't become complacent. I didn't have much difficulty at all once I knew I could do well. I could practice the piano and go to class from morning to afternoon, and literally go to the student union by 4 or 5 and play billiards with these guys from Saudi Arabia. One of them was a guy I called "Mo", short for Mohammed. Autism never affected me nearly to the extent that it can impact young people I've helped as an RBT. I was never enrolled in special education courses, but I just needed extra time and a quieter room to work in. By June of 2017, I was a licensed music teacher through a graduate-level education certification program online at another university. But honestly it was a joke, and now I wish I'd gone to the other school that accepted me for a similar program. I didn't want to drive around the DDD at night to go to school. My social skills were fairly strong as I was growing up, even though I later figured out (during high school) that I would sometimes (but not always) miss social cues and other nonverbal communication. After a few years of college, I learned to read people, and it's not nearly as difficult for me to do that as it was. Really I didn't even know that until I was nearly in college. During college I worked on making that problem go away, and most of the time it has.
ABAA4ALL: Did you have any ABA as a child?
Ben: I never had ABA. When my mother was taking care of us while Dad was at work, she was basically teaching us and raising us in a similar way to what we know as ABA for Autism. Upon starting at my current job earlier this year, I had a dim concept of what being involved in the autism field was, just as many of my current coworkers told me they were when starting. The training was very effective, both on the part of my BCBAs and through my interactions while shadowing people who were already RBTs before I was. I have only been an RBT for 2 weeks at this time.
ABAA4ALL: If you didn’t have ABA as a child, did you have any preconceptions about it? Have they changed now you are working in the field?
Ben: When my good friend started in this line of work, now 5 or 6 years ago, I thought it was a joke. I still think that parents could be doing a lot of the same things that we do as employees, but for many young people with or without autism, parents may not have the resources to do so. Many families I've met, even back when I was a schoolteacher, may have tough work schedules, very little money or may not speak English at all. It may be more difficult for those families to provide the level of relevant care and assistance due to those types of things. In my role I've already seen a lot of good things happening that ordinary school or daycare settings may not be able to provide.
ABAA4ALL: How did you get on at school? What qualifications do you have?
Ben: I loved preschool, but hated elementary school up until 3rd grade. My 3rd grade teacher helped me to enjoy school by giving me fun things to do that were related to some interests I had; writing and toy cars. After that my grades were strong until high school, and eventually I did well in college. Graduate school was a piece of cake; accreditation can be overrated. I have a Bachelor of Science in Piano and a Transition to Teaching certificate. I'm also a licensed music educator since 2017, and of course an RBT as well. I had a 3.3 GPA in undergrad and a 3.7 GPA in the other program. I always knew I was smart, but even in college I enjoyed the social scene much more than the courses I took. I graduated when I was 24, and completed the other program when I was 28. I'm now 30 years old.
ABAA4ALL: What hobbies do you enjoy?
Ben: It is often said that people on the spectrum may have limited or restrictive interests, but that was never a problem for me. I liked many things, especially snow, history, spelling and listening to music, among other things. From Kindergarten onwards we had at least one dog in the house with us, and we still do. We have two beautiful Cocker Spaniel females, Bindi and Baby. We just got Baby in March. When I started being a pianist in the Fall of 1999, I liked it so much that I became a piano virtuoso. I enjoy music, being a Christian and striving to know God, and history the best. When I was 12 I learned how to cook, and I'm not bad at that either. I then started to write poetry at age 13, but thought it was lame at first. My interests continue to grow; a full list would be exhaustive. I finally became a good driver too, when I was in my mid-20s, but I had a car since I was 17. I could have had a car about a year before, but I asked for a grand piano instead, and was given one. I still play the piano today and have performed some of the most difficult classical piano solos.
ABAA4ALL: Do you often tell people you are autistic? Do you think they treat you differently - and if so, is that good or bad?
Ben: I used to take great care not to tell people that I'm on the spectrum, but my high school classmates supported me for the most part. It was often asked if I would tell people in college about it, but I soon realised that, like the bully in 4th grade and the fear of airplanes after 9/11, I didn't have to care if people wanted to bully me for having autism. So I stopped worrying about it, and I still tell people today that I have it. I don't need to be in some "other" category like a lot of individuals and groups seem to want to be in since the recent political and cultural developments since the 1990s and up until now. The point of being an American is that you don't have to remove yourself from society because something about you is different.
ABAA4ALL: What do you say to the anti-ABA people who think ABA is harmful? There are many anti-ABA people online - what would you say to them?
Ben: I'm convinced that the social and political garbage online is just as baseless as things you might hear in a diner or other place where people gather. I don't pay attention to it as a whole. However, when ABA is carried out the wrong way, it can be very harmful. For example, when practitioners take away a child's food or drink and use that opportunity to run a trial. That's unethical and unhealthy. That stuff online is either nonsense or a call for us to be more ethical and more effective at what we do as therapists in this field. I wouldn't be surprised if the entire internet was one day reduced to being mainly for research, weather, and commerce. Even without our social media services, some people will disagree on pretty much everything, but they are entitled to their opinion, so much as the opposing position is made clear and reinforced with continued study, at least in the field we take part in.
ABAA4ALL: Have you experienced bullying because of your autism (online, through social media as well as the more physical side)?
Ben: I was bullied because I was small and skinny and not very athletic. Before that, it was because I wore glasses. Kids would call me Steve Urkel with my glasses and braces, and that made me angry. Similar things happened up until college, especially in high school gym. But it's impossible to say that they bullied me for autism, since I didn't even know I had it until late in high school. I'm not sure I would be as well-off as I have been for most of my life if I'd been diagnosed any earlier; it might have meant lost opportunities, special education classes, and an inability for me to find out what I was good at doing or talking about. I do move somewhat slowly sometimes, even though I can run pretty quickly; my high school gym teacher wanted me to join the school track team when I nearly ran a mile in 8 minutes without ever training before in that sport. Then I ran out of breath at the halfway mark, and finished the mile in about 14 minutes. I'm a lot more athletic now, since I started lifting weights regularly and swimming or biking, about 5 years ago. But as I started to mention earlier, at one of the colleges I attended there was a 3-on-3 basketball tournament. I was a hefty guy at the time, but figured it wouldn't be so bad. I did make some baskets, but all of that running up and down the full court just about knocked me out. I had to leave the game and get a bunch of Gatorade and water to drink. Of course that's situational asthma, but when I first got in shape in the Summer of 2012, I knew that I didn't want to go back to being unhealthy, even if it meant running or biking longer and longer distances to better condition me.
ABAA4ALL: What would you like to be doing or have done in 10 years time? This could be career-wise or life in general.
Ben: In 10 years, I'd like to be a married father of 2 or 3 children, own a decent home or apartment to share with them, and continue to gain prominence both as an RBT and as a freelance pianist and composer on the side. As much as I enjoy being an RBT, I'm not opposed to going back into education if things change at some point. I also plan to pursue a Master's degree, starting in the Fall of 2020, so depending on where I'm working at that time, I'll either major in Music Education or in ABA; honestly, I've already been a music educator and it wasn't that much fun. But then again, my current role might help me to be a better teacher. I've only been in a relationship with two women so far, so I'll hopefully be dating more women in the next few years or so. And I might find myself moving to northwest XXX, where my parents and most relatives have been for decades. There is a lot of air and water pollution up there, but being close to relatives and enjoying the fact that they get much more snow than XXX does could be a win-win situation. I've wanted to live up there since I was 4 or 5 years old, and I'm actually up there as I write this for a family function. And even the pollution has gone down considerably. As a kid I had breathing problems when I was up here, but that happens to me when I'm in XXX rather than up in the CCC anymore. So it's the home I practically never lived in. I also speak CCC, so I sometimes talk very quickly, and I used to mumble a lot, much like my grandfather still does. I drive an Oldsmobile, so I'd like to clean it up and put in storage since they haven't been made since 2004. I want a 2016 Jeep Grand Cherokee, but I could settle for a Honda CR-V, plus those are much more affordable and definitely last longer than Jeeps do. They also sometimes have All-Wheel-Drive, which could help in the Winter if I did move to the XXX.
ABAA4ALL: Is there anything you particularly like or dislike about your autism?
Ben: I like the fact that I'm not the status quo of how people see someone on the spectrum. I read Tony Attwood's Guide to Asperger's Syndrome last year and also wrote about my findings through LinkedIn, and it's depictions of children who know everything about batteries, the police, and a variety of things really didn't speak to me. I also love the fact that I have photographic memory. I can picture a memory as if I'm looking at a camera while it scopes a room or other environment, sometimes down to what colour the walls were, who was there, and even what direction I was facing at the time. During Senior year of college, for Biology 155, we had to go to the Zoo on a Saturday, in the Fall of 2012. I knew how far I was from AAA because a particular landmark looked skinnier than normal. A classmate said I was like Pocahontas because of my strong sense of direction.
ABAA4ALL: Do you have any stims?
Ben: When I was a kid, I would sometimes hold my hands up in front of me when something was loud or there was a sudden noise, or I might say, "Ahh!" when something frightened me. In my early 20s I got frustrated with some things, like not yet having a full-time job, still living with my parents, and so on, so I would often strike my head, shake my hands in the air, or get really hyper. Honestly those weren't done because I had autism; I knew that they were not appropriate skills, but I didn't care because they might make my parents go away. Since learning about the field of ABA for autism, I've mostly stopped doing those things because they don't reflect who I really am, or to put it another way, because I slipped through the cracks, I almost always knew what was appropriate and what needed to be changed.
ABAA4ALL: What’s your favourite meal?
I have always been proud of my mixed European and American Indian heritage. My great-grandparents on my mother's side were immigrants from Italy, and I love genuine Italian food and sometimes make it for dinner. My dad is German, Scottish and Polish, but his family was already far removed from the immigrant experience long before he was born in the 1960s. His mom loved Mexican food, and even today we all enjoy those sorts of cuisines. Personally though, I'm just a foodie that found out he wouldn't make enough salary to go to that many ethnic or cultural restaurants. I love Indian food more than anything else, and there's an excellent family-owned Indian restaurant about 15 minutes northeast of where I currently live. The only food I don't like is Korean food, but I did try it for the first time about a month and a half ago; it really wasn't half bad.
With thanks to Ben for such a lovely interview, where his personality really comes across.
Autistic adult Rebecca, or "Dances with Rainbows" as she's known on Twitter, now in her 30s, loves her work as an ABA therapist, which she's been doing for the last 5 years. Loves to see her little pupils learn key skills, and builds in a love of art in all her teaching too - here
Autistic adult Shanon, now age 20, tweets and blogs about how ABA encouraged him to learn, particularly motivating him to talk - here
Kaelynn Partlow, an autistic ABA professional
A lovely blog from Kaelynn, about her work as an ABA therapist helping her little pupils to learn key life skills. Read it here.
Amy Gravino, an autistic self-advocate and speaker
American Amy Gravino has an MSc in ABA and gives a talk on The Mighty's Facebook page about autism, women and advocacy. Amy speaks in particular about ABA from around minute 12 of this one-hour interview. She remarks that ABA is never about stopping a behaviour, but learning a new one. Find out more here. Amy has her own website Amygravino.com.
Daniella Kok, an autistic 12 year old
Beautiful autistic girl Daniella talked at the South East Association for Behaviour Analysis (SEABA) conference in June 2016 about how ABA has helped her and her brother: she is now at mainstream secondary and wants to be an actress and model. Here is her wonderful speech, in her own words:
1. As you know, today is all about ABA. ABA has really helped me in my life and I wanted
to share my journey with you, in case I helped you to make up your mind that ABA
can offer your children a hopeful future.
2. I was born in Richards Bay, in South Africa. I was a very healthy baby, but I had vomiting
and reflux. I did all the things a baby should do at the right time. I was even saying a few
words when I was one year old.
3. I have a brother and his name is Aaron. He is one year and nine months older than me.
He was diagnosed with autism when he was two years and seven months old. Luckily,
both the speech and language therapist and the occupational therapist knew about a lady
in Cape Town who trained people in ABA.
4. When I was 15 months old, my mother noticed that I had stopped talking completely
and I was very anxious, crying every time she tried to put me down. I screamed as though
I was terrified of something. I also started eating inedible things. I've been told this is called
pica. I used to eat mostly sand, so that all the pot plants in the house had to be removed,
because not only would I eat the sand, I would eat the plants as well. I even used to eat
crayons and the little pieces of the pages of my books. My mummy jokes I devour books
today, because I love reading and I read such a lot. I hope you know what devour means.
As you can see in this picture (photo accompanying talk, see below link), I had been eating
sand. I escaped out the front door as soon as no one was looking. I also ate other disgusting
things, but I won't go into that, because it's embarrassing. My mother believes I was able to
swallow vitamin tablets easily from a young age, because I had so much practice. I also
suddenly developed eczema all over my body and I didn't like most types of food.
5. I was diagnosed with autism when I was one year and nine months old, almost a
year after Aaron was diagnosed and I also started on the ABA programme. Aaron and I had
three different tutors helping us. In this picture (photo accompanying talk, see below link) we were doing some of my targets for ABA, sitting on a waterproof mat outside the bathroom. I had just started a toileting programme and was fed with lots of juice, so that I could practice going to the toilet. Mummy said I loved the juice.
6. In July 2007, my family moved from South Africa to England. We continued to be tutored in an ABA home programme. Aaron started at an ABA school in February 2008. In fact, it was Step By Step, the school where this talk is being held.
7. In this picture (see link below), you can see me with my brother's backpack. I wanted my own. Luckily, in May 2008 I also got a place here at Step By Step. I learnt many things here, thanks to ABA. I remember once a week I went with one of my tutors, Becca, whom I believe gave a talk earlier today, to a mainstream nursery to get used to working and playing with lots of other children in a mainstream school.
8. Unfortunately, we lost funding to come to Step By Step. And so, we had to start in a mainstream primary school in September 2010. My brother managed to gets a Statement of SEN, but I did not. Luckily, thanks to ABA and the help I received here at Step By Step, it enabled me to cope without any help. When I started St Mark's, I was very behind in my maths, because a lot of time had been spent teaching me to talk. By the time I left St Mark's last year in Y6, I was one of the best spellers in my class and I was in the second top group for times tables.
9. I was very excited when I went to secondary school last year September. Mummy worried about my transition to the new school Skinner's Kent Academy in Tunbridge Wells, but I was fine.
10. I'm in the top set for all my subjects. I have one friend called Lucy, who goes to my school and another friend, Michelle, who I met at primary school, but she goes to a different school. I still struggle making conversations, but my mummy is teaching me. When I grow up, I want to be an actress. That is why I will be starting modelling. These are some of the pictures from my test shoots.
Click here to access the photos from Daniella's presentation.
Blog - Autism Self Advocates for ABA - ABA Ireland
Most behaviour analysts do not use testimonials. In part, this is because our ethical code prohibits the solicitation of testimonials from clients, but largely it is because behaviour analysts believe that decisions about the selection of interventions should be based on experimental evidence rather than testimonials or anecdotes.
While an anecdote about a clinical outcome might encourage a behaviour analyst to research a particular method, he or she will not rely on this information alone to make a decision about the appropriateness of a proposed intervention. Ultimately, a behaviour analyst’s decision must be based on the empirical record. if you ask a service provider to provide evidence for their claims and all they can offer you are testimonials and anecdotes, then their claims are probably pseudoscientific.
Unfortunately, one of the side effects of behaviour analysts’ commitment to making evidence based decisions is that we sometimes underestimate the power of testimonials to influence people. Allegations of unethical conduct by behaviour analysts can take on a life of their own when published online.
Misrepresentations of ABA treatments for children with autism are shared and repeated and unfortunately there are pockets of the autism self advocacy community where it is believed that: ABA teaches that the use of aversives, compliance training, and the devastation of self-determination are all means worth the end achievement
Sometimes, the above view is presented as the consensus view within the autism self advocacy community. For the parent of a young child with autism or a person with autism who was considering using behaviour analytic services, this might seem like a good reason to avoid ABA. Fortunately, there are a growing number of examples of individuals with autism who champion ABA. Five of these individuals’ videos are shared below.
Temple Grandin is one of the world’s most famous individuals with autism. She has a positive view of ABA (see above) – especially what she terms the more “flexible” forms of ABA. Temple feels that the techniques she experienced as a child were similar to ABA and notes that the ABA intervention you use with a child who has severe autism should not be the same as the interventions that are appropriate for more able learners and vice versa.
A young UK man, who now gives speeches about autism, is Alex Lowery. He is autistic and as part of a review of the BBC documentary Challenging Behaviour, he offers his positive views of ABA based on the interventions he received as a child.
Kayla is a 12 year old girl with autism. When describing her experiences of ABA she says “Over time, I learned to play with toys, do puzzles, play with dolls and have fun at the park climbing and swinging”. She recalls learning to ask for music using a card with a music symbol by practicing “over and over again” and learning to tolerate having her hair brushed. Kayla also shares experience of having meltdowns and the ways in which she has learned to become more independent.
At the five minute mark in the video here, we are introduced to Cillian who is a 13 year old young man with autism in N Ireland. Cillian tells us that when he was 3, experts told his parents that he would not learn to “talk properly” or go to an “ordinary school”. By learning through ABA, he has proven them wrong and has been attending mainstream school since he was 4. He tells us about how his parents were told that ABA does not work and that it was cruel. He points out that, unlike him, the experts providing that advice did not have first hand experience of ABA. He found his ABA programmes to be “fun” and enjoyed learning new things. He believes that ABA helped him to realise that it is “okay to be different”.
Eli is a 20 year old US man with autism who started ABA when he was three. He is now studying to become a behaviour analyst. Eli says that ABA was the only intervention that helped him to learn the skills he was lacking. He also remembers having “fun” as part of his ABA programmes. He emphasises the importance of individualisation and building rapport. Later, he cautions against the use of discrete trial training on its own as he believes that it is important to also have sessions where the learner leads and the therapist uses natural environment teaching.
Eli would recommend ABA to any parent of a child with autism because he has seen what it can do. He believes that without ABA he would not now talk and would be living in a group home.
It is important to remember that every person who has a diagnosis of autism is an individual and no single viewpoint can be said to represent all members of the autism self advocacy community. While it is hoped that readers will enjoy the above videos, it is important to remember that anecdotes and testimonials – even those supportive of ABA – are no substitute for empircal evidence. For all of the latest research on the subject of autism and autism interventions, an excellent resource is the Association for Autism Treatment’s website.
From ABA to guitar hero! Love this TV item from Australia on a young man who has done so well via ABA, Asher.... https://t.co/fygLDfCm7H
Incredible graduation speech by autistic young man, had ABA right thru childhood, says ABA shadows were his friends
I am not so keen myself on the word 'recovery', but this is a pretty amazing video and the importance of early... https://t.co/BgkQj6W6QQ
Big 'Washington Post' article on an ABA success story - American family but the ABA seems to have been in London... https://t.co/zwTKHT7Xq9