Applied Behaviour Analysis (ABA) and Autism

In regards to Applied Behaviour Analysis (ABA). On the surface there is a lot that seems right with it. The main thing that is wrong with it is its premise about people being broken and needing fixing, although I am aware that there is a lot of variation in how practitioners practice, and for the record I have never been through ABA, but I am autistic and I do have over 20 years professional experience (and training) working with autistic individuals across the spectrum.

A lot of what ABA practitioners do, like positive reinforcement of desired behaviours and actions towards desired behaviours, and (for many practitioners) not reinforcing negative behaviours is something taught on almost all parenting courses. But the focus isn’t just on helping autistic individuals with specific areas of their life, it is saying that some of the things they do are wrong and need fixing. There is also an issue of things the autistic individual likes being used as rewards, and not allowing these to be used in other areas of their life. Depending on what is used, this is also bad practice. If a child has a certain interest they should be allowed to do that interest, not be told they can only do it if they do x. My view is that the general rule should be if something positively meets any of the child’s innate emotional needs that should be supported and facilitated, not turned into a reward – this is just good parenting practice.

This isn’t to say that there aren’t behaviours some autistic people do which don’t need to be addressed, but they focus on things like stopping stimming, and forcing people to make eye contact without thought about why the autistic person does these behaviours. These behaviours are just treated as something they shouldn’t be doing.

I like touching soft things and if someone is wearing something soft I want to touch it. I’ve read Of Mice and Men, I know how an overwhelming desire to touch soft things can have a negative impact and be seen as inappropriate behaviour so I don’t do it, but when I was younger I wouldn’t have a problem reaching out and touching the soft material – for me it was reading Of Mice and Men that made me aware of the potential reaction or thoughts and feelings others can have to what I saw as an innocent action so I don’t do it, but this kind of behaviour is fine to help someone change.

It is also fine to teach autistic people how to relax physically and mentally, how to manage their emotions, etc, and exploring and teaching someone alternatives to stimming. It doesn’t mean you are saying stimming is wrong or that they shouldn’t do it, you are just trying to explore the idea of having more choice and freedom about how they behave. It could be that they decide to use some of the explored ideas in certain situations and stim like usual in other situations.

Stimming isn’t the autistic person’s problem, the people who usually have a problem with it are others around that person who don’t think the autistic person should be doing the behaviour. For the autistic person it is a solution, not a problem, what you want is to help someone have a range of potential solutions available to them to choose from.

Likewise, not making eye contact isn’t a problem to the autistic person, it is a problem to others who decide to interpret it as rude or not listening etc, to the autistic person it is usually a solution, it perhaps helps them to keep focused on what is being said so they take in more information, or it helps to reduce anxiety levels, etc… So again what you want is to help them have a range of potential solutions to choose from, like ways they can ‘fake’ making eye contact, or strategies for how and when they can make eye contact etc.

I’ve never experienced ABA and I’m not an ABA practitioner, so I can only talk about what I know about ABA from learning about it rather than any personal experience of it, but I do have experience as a professional working to support autistic individuals, and as an autistic individual myself. My understanding of ABA is that how it is usually practiced is behaviour modification through intensive positive reinforcement of desired behaviours and no reinforcement of undesired behaviours (although I am aware some practitioners have negative reinforcement of undesired behaviours and these can be unpleasant for the autistic individual and can cause them unnecessary anxiety, so you would want to check how a specific practitioner operates). As mentioned the main problem is who decides what is desired and undesired behaviour, and why do they think that behaviour is desired or not, and what do they think will happen if the child does the undesired behaviours? Another issue is some people talk about it like it is a cure when it isn’t a cure – if someone is autistic, they were born autstic and they will die autistic. They will not be cured. They may develop coping strategies and strategies to blend in and strategies they will use in different situations to appear neuro-typical in specific situations, and for some they may get better at this over the years, but they will be working hard to do this and will need to have some area of their life at least where they can be themselves, not this artificial version of themselves. And some people may decide they shouldn’t have to pretend to be anything other than themselves, and so they refuse to do so, and as long as they aren’t causing harm to others or to themselves then this should be allowed.

In parenting courses the aim is to help parents develop an authoritative parenting approach. This approach works fine even with autistic children, although you must be even clearer with autistic children around boundaries, consequences and routines etc., and it is very important to keep everything at the level of understanding of the child, whereas most children can cope fine if the parent doesn’t get it right all the time. So you want to have parents develop a child-centred authoritative parenting style, where they are led in how they apply that parenting style by the individuality of the child.

An authoritative parenting style focuses on showing high love and high limits and expectations. So it is different to an authoritarian parenting style which is high limits and expectations and low love (an army major style).

So you expect your child to do their best (not the same as expecting them to ‘be’ the best – you praise them for effort rather than focusing outcome only) you expect them to take responsibility for their actions, because you come from a place of love you show respect and respect their opinion, what you are doing is child centred, so the focus is on what is right for the individual child, not what are you going to impose on your child. That is the fundamental difference between ABA and what I would recommend, that ABA is like an authoritarian approach, it is dictating to the child how they must respond and what the practitioner decides is the right way to do things, rather than an authoritative approach which would be based on what is in the child’s best interests as a unique individual.

Some could argue that some children don’t know what is best for them, and over some issues (with all children) this is true, but the areas where someone should intervene are where a child may come to harm. So taking action because your teenage child has gone off with the local drug dealers because they see them as ‘friends’ who ‘get’ them, unlike you the old parent who knows nothing is a reasonable thing to do. The child doesn’t see the risks they are placing themselves at and the role of a parent isn’t to be the child’s best friend, it is to protect the child and help them develop into a responsible, respectful adult.

Helping a child to learn to speak through calm positive reinforcement is a good thing, helping to improve and develop many skills is good. With ABA generally as most practitioners appear to do it nowadays there isn’t a focus on negative consequences, but negative consequences are fine. There are two types people should use – natural consequences and related consequences. So if a teen goes out drinking and is drunk a bad consequence would be to shout at them and take all their belongings away, a good consequence would be, if they were sick, they clean it up. In the morning they get woken at a usual wake up time, they don’t get to lie in bed and sleep, just like normal they have to get on with the day. The headache etc is the consequence of drinking the night before. If they put themselves at risk by their behaviour and it was relevant then you may have consequences like, if they end up meeting with those same friends and not being home when you tell them they need to be home by, because they could be at risk you will call them, if they don’t reply and come home you will phone the police to find them etc… So these are negative consequences but relevant to the behaviour.

It is also important to help teach autistic children to manage uncertainty, to manage change, to manage sensory problems, because as they grow up all these things will happen if they are to be independent, to understand non-verbal behaviours and how different combinations of behaviours are linked to different emotional states, and communication skills etc. So teaching the skills and reinforcing this learning is good because these are things they will need to learn. This is just an extension on what parents should be doing with any children. Children need to prepare for independence, so they need to learn to do various household chores, to cook, how to interact with others in different contexts – like saying please/thank you/hello/goodbye, etc, how to catch public transport, safety awareness, what to do in emergencies, etc… all of this and a lot more needs to be taught to children/teens before they leave home. With autistic individual’s they may well have a lot more that they need to learn because they have additional challenges they will face if they are to live independently. You can’t avoid uncertainty, change, sensory challenges, social communication challenges, etc., and live independently and hold down a job. To avoid all these things means to be alone and probably reliant on others – either through direct support or through benefits etc and perhaps just living alone never stepping out of your comfort zone.

I don’t see any of these as trying to change who someone is, they are teaching and developing additional skills so that the person has more choice. The non-autistic teen may leave home and never clean their flat, it doesn’t mean they didn’t learn how to clean. They know how to clean, they know it is an important skills, but they can decide not to clean if they want to, and it could be that when they end up in a relationship or reach a specific age they suddenly decide they want to clean after all, and as long as it doesn’t become dangerously unhygienic or pose a risk to anyone then their decision to clean or not to clean is their right. Likewise an autistic individual may leave home and live independently and may decide to go to work, work, then go home, and never socialise, because this is comfortable for them and they prefer it, but if they had to attend a team building work course for a weekend they know the skills to keep calm, to get through it, even if they would rather not do it. It could be that they decide not to do it, but that is their choice. The idea is to give them more freedom and choices rather than the only choice being ‘I can’t do that, I’m quitting this job’.

Another issue with ABA is that it is just ‘identify the behaviours that we don’t want the child to do and change them, identify the behaviours we want the child to do and get them doing those behaviours’. As mentioned, it misses the ‘love’ element, the respect for the child and what they are communicating by their behaviour and their inner world and emotions. So if a child gets angry when told to stand in line at school because they struggle with the noise, with the chaos of all the movement around them, with people bumping into them, touching them etc, and then they get angry, ABA would focus on rewarding when they can be in that kind of situation and be calm – a good practitioner would hopefully have taught them the required skills. But the reality is that they are unlikely to have been able to practice being in those situations in ‘real-life’ so what happens in a therapy session may not translate to the real-life setting. A preferable strategy would be to have the school recognise that the behaviour is communicating the challenges the individual is experiencing with the situation and look at what can make that easier for the child, like perhaps having a few smaller lines, or having them at the back perhaps able to wear headphones, or have them seated somewhere etc – obviously there are many factors you would look at to decide on the way forward. One thing I would do if it was me as a professional in this example is agree a way out of the queue but also get agreement for the child to do some of the strategies they have been learning and see how long they can successfully remain in the queue and whether they can remain their longer than they did previously before implementing what we have agreed.

Autistic people have a very emotional inner world and many autistic people either feel a lot of emotion or no emotion, there is rarely a nice mild in-between stage. So this has to be explored and respected as well.

I think one thing for parents to be aware of is that ABA isn’t a ‘cure’ it isn’t designed as a cure, it isn’t meant to ‘cure’. The autistic person is and always will be autistic. With any luck they will just have learned skills and behaviours that help them navigate the world better. So parent’s shouldn’t seek it as a cure, but as support for themselves and their child if ABA is what they are seeking. ABA doesn’t teach a child to be emotionally spontaneous etc, so the child isn’t going to suddenly start hugging or ‘showing love’ how they want the child to just because they had ABA. This comes from teaching about emotional intelligence and theory of mind, and reciprocal communication etc, and even then (I’m nearly 40 and struggle with all this) it doesn’t develop to be ‘like normal’, and if the autistic person is directly asked they will probably state that they are just doing what they think they are supposed to be doing for the situation. This can annoy people, like when one partner says to another ‘I want you to wash up because you want to wash up’ and the other partner says ‘I am washing up because you want me to wash up and I want to make you happy’. This type of situation happens a lot with couples, and ends in unnecessary arguments. The first person should be happy the second person loves them enough to do something they don’t really want to do because it will make their partner happy.

Here is some research around ABA (here is a meta-analysis study: A meta-analytic study on the effectiveness of comprehensive ABA-based early intervention programs for children with Autism Spectrum Disorders – ScienceDirect)

Over the years I have worked with autistic individuals across the spectrum. Some who would be described as having classic autism may well struggle for certain learning to stick, for example, one autistic girl I worked with had a tendency to run across roads without looking. It didn’t matter what was said to her about the dangers of this, she wouldn’t stop at the road side. This individual and others like her have needed far more intensive support, guidance and monitoring. I prefer the idea that parents learn the required skills and are supported to parent in a way that will get the most from their child. This support should include ways for the parents where needed to have ‘me time’ whether it is having times when an experienced professional will look after their child for a day, or an evening, or where the child can go away somewhere for a few days on a short break that is tailored to their interests, etc. I know support like this exists (at least here in the UK) but that it is often difficult to access due to funding and thresholds.

My view is that the goal with autistic children should be to help them develop and thrive in their own unique way. Behaviours that they do which don’t cause problems to anyone else and don’t harm them should be allowed to continue if the autistic individual wants it to continue. The child’s level of understanding should be what is considered when looking at what to teach, and the context things will be needed in. There needs to be more focus on listening to the autistic community about their experiences and what their behaviours mean to them, rather than making assumptions about what behaviours mean based on a neuro-typical perspective.

There is nothing wrong with many behaviours autistic people, especially children do, usually when you explore who has the problem, it is someone else – “they aren’t looking at me so they aren’t listening” your interpretation, not necessarily correct, “they are daydreaming they aren’t paying attention” your interpretation, not necessarily correct, “they are fiddling with something/doodling etc, they are being rude/they aren’t paying attention” your interpretation, not necessarily correct. There are many examples like this where because something isn’t the way they would do it, they assume it shouldn’t be done that way.

If a behaviour is likely to cause harm in some way to the self or others then it needs addressing, just like you would with anyone else. If it doesn’t cause harm to the self or others then you can teach alternative ways of getting the same outcome as the behaviour, but it is up to the individual whether they want to do their current behaviours or the alternative behaviours, but this involves understanding the internal workings of the behaviours from the autistic person’s perspective first and accepting that what may be seen as something different is likely to be a solution for that person, not a problem for that person.

Dan Jones is author of autism books including ‘Look Into My Eyes‘ and ‘Asperger’s Syndrome: Tips & Strategies‘ and has over 20 years professional experience as well as being autistic.

Living With Autism: Interests & Routines

People with autism can be very single-minded. They can appear very stubborn and inflexible. A large part of this is because they dislike change. They often get deeply focused on one or two key interests, and these interests can be maintained well into adulthood. Often if someone with autism likes something they don’t stop liking that thing. Most other people ‘grow out of’ interests and change tastes as they grow up. Those with autism frequently like the same music long after others have moved on to something else, they may play the same songs over and over again, they will like the same programmes and may watch those programmes repeatedly. As a teen I used to draw a felt tip line on video and audio cassette tapes to mark out where songs or programmes were. I would then watch the same TV programmes over and over again – for me personally it was usually documentaries about sharks or dolphins or whales, or Elvis Presley’s 1968 Comeback Special, and listen to the same song over and over again – when I got a reversible cassette player I used to have Bohemian Rhapsody playing on both sides so that as soon as the song ended I could flick a switch and it would play the song on the other side of the cassette.
I’m now nearly 40 and I still like a lot of the same cartoon’s I’ve always liked, I still like a lot of the same books I’ve always liked, and still like a lot of the same songs. I have added additional things I like to my list over the years, but I haven’t ‘grown out of’ things I used to like. I have been obsessed with hypnosis and related topics, nature, and martial arts since being a child. I have always asked for exactly the same hair cut since being a young child until now (although I also hate getting my hair cut!), I will wear the same items of clothing day after day, year after year. When I like something I instantly obsess about it and have to know or have everything about it. So I like Katie Melua and have every album and released single by Katie, and can’t imagine a time in the future where I stop liking Katie. I like Russel Watson, and the same applies, and Meatloaf, and The Piano Guys, and Jools Holland, and Elvis Presley. I like Derren Brown and have seen all of his shows (some more than once), and own all his books and DVD’s etc, I like Hypnosis, so have everything by Paul McKenna (because of the impact he has had on my life), everything by Stephen Brooks, everything I can by Milton Erickson, and by Ernest Rossi, and Richard Bandler. I never really read fiction before meeting my wife, but she introduced me to Dean Koontz books, so I have almost all books by Dean, including many of his books under pen names, and I’m obsessed with wanting to learn knowledge – especially scientific knowledge, so have many science books.
Interests can often be a good coping mechanism to handle sensory overload and anxieties, you can become absorbed in the interest and so shut out everything else. Interests can also become obsessive because of having black and white thinking, often with people with autism things are all-or-nothing, so it is common to either not find something at all interesting, or be obsessed with the subject. This goes for other areas for the autistic person, they may either want something, or definitely not want it, or like a food or totally dislike it.
Usually the autistic person can be so interested in a topic that they are an expert in that one topic. They may have deficits in other areas of their life, like struggling with social skills, but may be incredibly knowledgeable about their chosen topic. Some will know movie lines by heart, or be able to recite dates and historical events. Some (though not as many as I think the public thinks) have a talent which stands above the talent of most other people, and yet may struggle hugely in other areas of their life, they could have a savant ability.
Those with autism also often want clear routines, this reduces uncertainty and helps to keep anxiety lower. I know I struggled as a manager, and one struggle I have self-employed is uncertainty and having to make decisions, I struggle to make decisions unless it is an emergency so that there is a clear over-riding focus which is on safety, so I am making a certain decision around safety. If I have to decide on less important things I struggle to make a decision and I want someone else to tell me what to do. I prefer being an employee who works a regular and unchanging shift pattern, where I do the same thing everyday, and if I had the choice this is what I would do. The difficulty is that employers add in tasks at short notice I’m not prepared for doing and I am uncomfortable to do, and many companies have a focus on trying to drive staff for progression within the company – again something I’m not comfortable with. Ideally I would love to be able to not work at all and just follow my interests every day, where I could go for woodland walks regularly, where I could study science topics daily, and focus all of my time on learning. Self-employed has a lot of jobs I struggle to do as someone with autism, and being a manager has too much focus on me being the one who has to make decisions. I can see why those with high-functioning autism who could work struggle to work. I work self-employed, and am much happier doing this than I was being in employment, but it is frequently very difficult not to quit what I’m doing because of all of the uncertainty and anxiety employment and self-employment can cause.
I find I can obsess about something or have a routine, that can change in an instant if things change. So when I did a road running race as a teenager I was nearing the finish line when a marshal told me the route had changed and I had to take a slightly different route to the finish line. My motivation to keep going faded instantly and although I was near the front I walked the rest. When changes in jobs I’ve done have happened I’ve quit the jobs rather than sticking with the changed routine. When I started a Master’s degree, it was the most important thing I had done in my life (other than getting married) and within months I quit because of goal posts changing. As it was so important I tried fighting this, but couldn’t overcome my in-built response to quit. This, and my black-and-white thinking are two things I would love to change about myself.

Living With Autism: Flexibility of Thought

Flexibility of thought difficulties include struggling to handle change, it is easier to process that things are the way they are and will always be that way. It is difficult to process when plans change and you have to suddenly think about something differently that you had already planned for your thinking for. So if you plan a day out, planning what train to catch, what you will be doing, where you will be eating, etc., then you want and expect the day to go like that. It can cause anger and anxiety when things don’t follow this pattern. So if it is decided not to go out now for the day then this can be difficult to handle, suddenly there is uncertainty about how things will go, and it feels like the plans were just a lie because they never happened in the end.

It is difficult to interpret and understand the thoughts, feelings and actions of others. I know most people find this at times, but in most situations most people can grasp why someone is thinking, feeling, or behaving the way they are, whereas those with autism struggle to do this. If someone is crying they may be able to work out that the person must be upset, but they may not understand why the person is upset. This can lead to seeming insensitive or saying the wrong things. It is easy to accidentally offend someone because you can’t connect how they are responding with any cue, and this can even be with things you have said. So you may upset someone, they are now crying or angry with you and you can’t figure out what has just happened to make them cry. And the way people seem to communicate doesn’t help, because often the response is that you should know why, and should know what you have done – but you genuinely have no idea why or what you are supposed to have done.

When I was younger I used to find it very difficult to understand how things were going to go. I hated (and still do) uncertainty, I would avoid situations that didn’t have clear patterns which made them predictable – this often meant avoiding situations with people, because even seemingly predictable situations can become very unpredictable once you involve people. As I have grown up I have learned to do mental rehearsal. I will spend hours mentally rehearsing situations and how they are likely to go, and I will practice multiple different outcomes which could occur and how I will react in all of these different outcomes. I will also practice very unlikely outcomes and think of what I will do in these situations. This way many things that happen that I had time to prepare for like this I know what the outcome will be which helps me handle these situations better and reduces the uncertainty in the situations. This is why I find it easier to handle significant incidents – like someone attacking me, or an emergency, than small things, like interacting in conversations with people, or catching a bus somewhere.

Many people with autism struggle to recognise danger. As this is something I think most children and teens have it can be difficult to identify whether not recognising danger is linked to perhaps having autism, or just a normal part of growing up. There would be other traits you would also be looking for as well as the child not recognising danger. I personally used to be aware of dangers and would calmly deal with them, but was never bothered by most dangers. As I have grown up I’ve become even more aware of dangers due to the type of work I’ve always done. I suspect I’ve always been unaware of certain types of potential danger, although I’m more aware now. So if I could see that something was likely to cause a fire, I would go and deal with this. If I was babysitting my brothers as a child I would recognise if they were possibly at risk, but I wouldn’t feel intimidated around people so I could enter situations which could be dangerous and not notice, or I could do things which I feel wouldn’t be a problem – like putting metal knives into toasters to get toast crumbs out which were touching the elements and create an electric shock. Friends have often felt protective over me for example, when I will have no problem going to a party where others feel would be dangerous parties to be at. I am always told I’m too trusting of others, and believe what others say too easily.

Another area of flexibility of thought which autistic people struggle with is often imaginative play or activities. For example, they will often build a lego model of exactly what the box says to build, and are less likely to build a model of something they make up, or they will play with a train as a train, and will struggle to see that the train could be a gun, or an airplane, or hammer for a game. With practice this skill can be developed. I don’t know how most people think flexibly and imaginatively about play or activities, but one way I’ve found to work is to think ‘what can this be used for?’ and try to think of similarities. So a train is long and thin – rockets are long and thin, so you could pretend that the train upright is a rocket. The train is long and thin, hammer handles are  long and thin, so you could pretend that it is a hammer, the train carries people and is long and thin so you could pretend that it is a weird airplane, the train is long and thin, the nozzle of a gun is long and thin, so you could pretend it is a gun.