I would like to start off this blog, Autism – looking beyond surface issues, by offering a big thank you to all the kind comments I have received on and off line since my first blog was published. It is very encouraging to learn that these thoughts resonated with so many. By far the most powerful feedback to the blog came from an adult who actually experiences Autism. Before starting with the “how” element of this blog, I would like to share these words with you anonymously.
“Oh and, by the way, I am Autistic…
It seems you are on some kind of a right track along similar lines, or at any rate have managed to notice that 90% of Autism is on the inside looking out, and there is more to it than fixing the surface appearances. If I have a dollar for every time I explain that I cannot tolerate interacting with people for more than a few hours a week and somebody answers with a variation on:
“But I don’t find you objectionable”
They seem utterly unaware that there is a whole person, with her own feelings and reactions inside me that has the lions share of control over my stress and tolerance levels…and the more, supposedly “Autism Aware” they are, the worse that obliviousness seems to be. It is as if, on some visceral level, people genuinely believe that Autism is entirely a disability of appearances, and if you could just teach those it would all go away.
How very wrong they are.
Anyway, usually I try to avoid looking closely at anyone saying anything about autism because whenever I look too closely it is always so hopelessly misguided, dehumanising and/or outright morally bankrupt that it terrifies me into a pit of despair that, as an autistic, take some serious repressing just so I can function, but your post was one of the very few rays of hope I have ever seen.”
I don’t know about you, but I found this person’s words to be incredibly powerful. Not only do they so honestly portray the painful reality of life with Autism for an adult but they are a reminder to us professionals that qualifications and experience need not equate to understanding. A huge thank you for this feedback. It is this kind of feedback that inspires me to continue to spread the good word of a different approach to autism.
I want to forewarn you about the length of this blog – I tried to cut it down somewhat, but this is as short as I could manage. As I said in my last blog, there is no quick fix and the explanation behind the “how” of a different approach requires some detail too. Please be sure to watch the supporting videos in their entirety as they are much more powerful than the words I write.
No quick fixes….
If we are to be brutally honest, we all seek quick fixes for many of the problems we face. Understandably, this type of thinking can also creep into the way we approach and treat the painful problems experienced by our children with Autism. No matter, how tempting this is, you should always remember that the core symptoms your child exhibits all have origins in early development and that overlooking these origins can have painful implications for the child’s future development.
Let’s get on with the how.
A little neuroscience – made simple – ( a big thank you to Dr Daniel Siegal – Neuroscientist – for making this very complicated subject make sense)
When we are dealing with developmental issues involving the brain and believe me, they all involve the brain, we have to appreciate the amazing power it has to grow and continually re-organize itself. In recent years scientists have developed brain scanning technology that allows researchers to study the brain in ways that were never before possible. This technology has confirmed much of what we previously believed about the brain. However, one of the findings that has shaken the very foundations of neuroscience is the discovery that the brain is actually plastic ( not literally) or mould-able. This means that the brain physically changes throughout the course of lives, not just in childhood, as we had previously assumed.
So what is it that moulds the brain? It is our experiences. Even into old age, our experiences actually change the physical structure of our brain. When we undergo an experience , our brain cells called neurons, become active or “fire”. The brain has one hundred billion neurons with an average of ten thousand connections to other neurons. When neurons “fire” together, they grow new connections between them . Over time, the connections that result from “firing” lead to “re-wiring” in the brain.. This is very exciting news – It means that we are not held captive for the rest of our lives by the way our brain works at the moment.
Take a look at this wonderful video that beautifully illustrates the wonders of the brain. Don’t be surprised if you shed a tear.
Quite incredible isn’t it?
Implications for Autism
Given what I have learned about the amazing capacity of the brain to overcome disability and re-organise itself, I am no longer happy to see the painful symptoms of Autism as impairments or deficits, that we can do nothing about, other than just try to make life easier for the individual. I am not talking about cures, but using what we now know about the brain and development to help reverse the cycle of dependency that exists for people on the Autism Spectrum.
Developing Social Understanding over Social Skills
For reasons that are very understandable, we spend most of time and efforts in Autism treatment, education and parenting trying to teach children appropriate behaviour and Social Skills. This is what we measure our success upon. Although I understand this, I would like to questions how useful this is?
In order to develop a skill and be able to use it successfully in multiple settings, we must first have an understanding of this skill. New skills need to be learned in supportive and competence–producing ways if they are to be internalized and useable. Trying to force a child or bribe a child to learn and use information and skills generally leads to a child feeling insecure, unsupported and incompetent. Even if you succeed in getting children to produce responses in this manner, the meaning and understanding is not necessarily there. The child’s ability to generalize the learning to real life situations will be limited.
Here is an example of this: In my everyday work, I have the privilege of visiting many homes to see parents of children with Autism. Almost always, the child is prompted several times, to say hello to Declan. Eventually, when they have given up the will to live, they respond. The pressure is lifted from the child and the parent is happy their child has greeted me. It is very understandable for parents to want their child to have this basic social skill, but here is the problem: When we prompt a child to display a skill like this, we are teaching them to behave and not think. They most probably have not understood the reason why they should greet me and more importantly they are denied the opportunity to choose whether to greet me or not. The most likely outcome of this approach is not that the child learns to greet visitors who come to the door, but the child learns to greet visitors, when they are prompted to. We are teaching the child to behave and not think.
Now, how can we promote thinking over behaving?
This is a long story and an even longer process., but I hope you see from the short case study below, that this very achievable and very rewarding for both child and parent / teacher.
In order to learn any skill and use it effectively, you have to be developmentally ready to discover the meaning attached to that skill. More importantly, any teacher or parent interested in developing this understanding for a child must be cogniscent of what is required of the child. I am happy to share more understanding on this topic, in a future blog, if readers are interested? For the purposes of this blog, I want to share something you can do to promote such social understanding and to show you a beautiful video clip of a child who is prospering from his parent’s hard work and belief in their child and in this process: Please remember, this is not a bag of tricks, you and your child must be ready to learn like this.
Thinking about the Language we use:
I would like you to think about how you communicate with your child or student with Autism? In most cases, there is a huge difference in the way we communicate with these children than how we communicate with typically developing children. It might be a good idea for you to video your interactions and carefully compare them.
If you have carried out this examination, you will probably find, that your communication with the child with Autism is very instrumental in nature. We are generally asking the child questions or telling them what to do.
Here are some examples: I bet they sound familiar?
What did you do at school today?
Put your raincoat on, it’s raining
Say hello to Declan
Don’t do that.
There are many problems associated with this type of communication. Here are a few:
1 – Firstly, by telling a child what do, you are asking them to behave . You are not asking them to think and to problem solve. You are directly prompting them toward the answer to a problem.
Let’s use the example of the raincoat.: Sure, it is a good idea for a child to wear a raincoat in the rain, but why provide the answer to the problem? Why not say something like this, Gosh, it’s raining outside, I wonder, what kind of clothes would be best to wear? Here you are presenting the problem to the child and allowing them the opportunity of solving it. You are encouraging thought over behaviour.
In the example of “say hello to Declan”, again you are directly prompting the child to behave. Why not say something like,: Declan is here. The last time he was here, he was delighted when you said hello to him. Here again, you are presenting a problem for the child to solve and above all you are respecting the child’s right not be bothered to say hello to Declan if she does not want to.
To put this simply, you are giving the child a hint towards solving the problem.
2 – Secondly, can you put yourself in the position of the child who is constantly being told what to do and continually being asked questions? Would you be happy to participate with a communication partner who treats you like this? I doubt it. Would you want to spend time with a person who does this? You would probably resist such communication and give the first answer that comes into your head, so that person will leave you alone. Does this sound familiar?
So the reality here is that our choice of language as parents and teachers can determine
(a) whether we are teaching our children to behave instead of teaching them to think and understand
(b) Whether or not, we are the type of communication partner that our children want to pay attention to and learn from.
Meet Tom (aged 5)
I have had the pleasure of working with Tom’s parents for a little over a year now. That’s right this approach is about empowering parents and teachers to make changes, rather than a therapist to child relationship.
Toms’s parents have put considerable effort into changing the way they communicate with him. They have created a culture of hinting within the home where Tom is encouraged to solve problems, rather than be told what to do. Through this, Tom is becoming a very good thinker and problem solver. He now recognizes the subtleties of typical social communication and is able to act upon them.
Please take a look at this short video to see what I mean. Please note Tom has not been told what to do nor has he practiced this type of activity before. This is a natural moment beautifully caught on camera…
Do you see Tom pick up upon his Mum’s need after a pretty vague hint? Do you then see him act upon this hint to firstly remove Mum’s shoes and proceed to get her more comfortable footwear. He then struggles to get them on for her. This is all without being told. Now look at, Mum’s feedback to Tom. This goes way beyond “good job”. This feedback is about making Tom feel competent and ensuring he knows that this thoughtful behaviour was warmly appreciated. What are the chances of tom looking out for signs where he can help his Mum again? I’d say pretty strong. In fact since this video was made, Tom has become even more accomplished at picking up the needs of others. Are neural connections being made here? I would certainly say so.
If we examine, the deficit model of Autism, we are told that children with Autism have an impairment in reading other people’s minds or in being empathic? They certainly have challenges in this area but it is possible to create competence for the child in this area of thinking and the results are very rich for both the child and family, as you can see from the video of Tom and his mum.
I would like to thank Tom’s family for sharing their successes in this way. I would like to thank Tom for being such a great lateral thinker. Tom now greets me independently every time I see him. Sometimes he just says hello, other times it’s a high five and more recently it’s a hug. I will completely understand if at other times, he just can’t be bothered. Isn’t that the way it should be?
Declan Sweeney, BSc(Hons) Psych, ACE (Autism), Certified RDI Program Consultant