Children and adults diagnosed on the Autism Spectrum by definition are struggling in many areas: social understanding, flexible thinking, communication and the list can go on depending on the specific needs of the child. What approach do we take to supporting the needs of these children? Historically, by and large, we have taken a compensatory approach.
In other words, we find ways to work around these problems so that the child / adult fits in to the mould of what we expect of them in given situations, be it school, home, college or in a residential service. Our main motivation becomes applying strategies that help them more appropriately fit into a box. An example of this is in the education system, where we employ strategies to get the child to sit quietly in class, do school work and projects, learn academic skills and wait in line without becoming upset.
While we make attempts to help the child with their social understanding and communication skills, we do this on a surface level with little understanding of the developmental processes that contributed to their difficulties. As a result of this poor understanding of these developmental processes, we resort to compensatory approaches which have limited long term impact on quality of life.
It is not difficult to understand how we started to depend on compensatory approaches to supporting people with autism, but it is more difficult to explain why we still depend upon them in our treatment of autism. I find it hard to come to terms with the huge gulf between what the research world tells us about autism and what we do on a day-to-day basis to support and educate people with autism. The majority of treatment methods are still looking at the disorder through the same lens of what we knew decades ago and not on what we know now about the core features of autism, current neurological research or developmental psychology. The longer we permit this gulf between research and practice, the longer we will starve our children on the spectrum of opportunities to develop a quality of life. The longer we exclusively focus on the deficits, the longer we avoid addressing the underlying developmental and cognitive issues.
I feel there is a societal lack of ambition or optimism for people on the Autism Spectrum which, today, is unnecessary and most unhelpful. Historically, the disorder has not been viewed as having a very favourable prognosis. We do not have to look back that far to when parents were told to institutionalise their children because they were considered un-teachable. Teaching strategies that emerged in the 1970’s and ‘80’s were a major step in the right direction. Teaching methods such as Applied Behaviour Analysis from Lovaas and Structured Teaching from Schopler began to pave the way for a conceptualization of the disorder that resulted in some positive outcomes. We then had some strategies to teach those with Autism some academic and life skills that people had said were previously not possible.
The problem is however, that while research on the brain and autism has continued to provide us with new information, our treatment approaches have stagnated and for many here in Ireland, there is no treatment at all. The methods and thinking we were using 30 and 40 years ago are still the primary methods being used today. It is not that there is anything wrong or bad about such methodologies but now we simply have new information that will support us to do better. We now have the capacity to take what we know about autism and take it onto a new level, beyond compensation and actually work to correct or remediate the core features of the disorder.
I can think of no other form of treatment for disorders or illnesses where clinicians are still doing what they were doing over a quarter of a century ago. I can also think of no other disorder or illness, where research has all but been ignored in the clinical world. With 1 in 91 of our children developing autism, society can no longer get away with blatantly ignoring the needs and rights of it’s most vulnerable.
Tuesday, March 23, 2010
Wednesday, March 10, 2010
Fear of Uncertainty – are parents and children with autism really that different?
When a child is diagnosed with Autism, parents’ dreams are naturally shattered and their lives are devastated by the news. There is an immediate fear of the unknown. This occurs whether they have heard things about autism previously or know very little about it. They have certainly not heard anything positive about what is happening to their family and they are likely to have an immediate wave of fear and incompetence wash over them. “I don’t know what to do – I don’t know anything about autism.”
When we look for support in nurturing our children with Autism, we are prone to look for easy step-by-step instructions for how to teach children with this disorder. We quickly find that we are disappointed and that no such advice or quick-fix is available. There is no one course of action that can universally solve all of the child’s growing and developmental difficulties.
Having worked in autism for 16 years with children and adults on all parts of the spectrum, I have learned one thing that really does drive growth and development. It is the one vital piece of information that parents must keep in mind when teaching and supporting children with Autism - far more important than any strategy, curriculum, product or piece of information out there – and it is this:
It’s all about YOUR attitude!
The attitude that parents and teachers bring to the experience of supporting and educating children with autism determines the amount of success that will be experienced. An attitude of embracing uncertainty and viewing it as an opportunity for growth and development drives success. One of fear or resistance towards the uncertainty that the experience brings only hinders the family’s acceptance and the child’s development.
What I hope you will find as you read through this, is that the way you understand your child’s disorder and the obstacles it presents can give a whole new outlook on your work with your child. What underlies many of the negative and fearful thoughts that accompany an autism diagnosis is a pervasive sense of insecurity about the unknown. Having a child is a huge challenge in itself but for most of us these are healthy challenges that are born out of our own choice and our love for life. Having a child with autism presents a completely different challenge. The challenge no longer feels healthy and it certainly was not a choice.
I call it The Fear.
The Fear
This sense of insecurity is perfectly natural. We like to be in a comfortable place where we understand what is happening around us, know what to expect and have a sense of control about what is happening to us. That is what makes us feel confident and secure, and provides a setting in which we can thrive. This is completely natural; but we need to challenge this preference when our parenting boat gets rocked by the challenge of parenting a child who is the often epitome of uncertainty, unpredictability and loss of control.
As I see it, we have 2 choices:
1. Embrace the uncertainty and rise to the challenge; or
2. Continue to live in a place of fear that prevents us from proceeding down a path of overcoming our feelings of insecurity and helplessness.
Let’s examine this fear a little more. Have you considered that the same fear of uncertainty and feelings of incompetence that parents feel is a direct parallel to the life experience of children on the spectrum? Think about it. One of the main characteristics we see in children with autism is their difficulty managing uncertainty. This is reflected in multiple behaviours, be it avoidance, aloofness, passivity or aggression. You’ll notice that the common thread of all these behaviours is an inability to manage uncertainty, which then leads to fear and, very often, resistance and a retreat to more comfortable and consistent experiences. Its clear that there’s a definite connection between how parents feel and what children themselves are feeling. The feelings are similar and are often the same when we venture into the unknown.
Making this realization has an upside: you have much in common with your child and can connect with them on a much deeper level than you realise.
The key is to get in touch with your own response to uncertainty and to look at the child with autism through this lens.
In doing so, you will gain a whole new perspective of what they are experiencing and why they so often behave in the way they do. The child will often feel incredibly fearful and incompetent because there is so much unknown and uncertain throughout their day. This often leads to resistance in an effort to get back to a place of comfort and stability. Sounds familiar, right? After all, its a totally normal response. Have we not all experienced this many times in our life? You can now see how you can begin to conceptualize the behaviours, the emotions, and responses of these children in way that makes sense on common human level.
Baby Steps
There are also significant parallels in how we as adults relate with uncertainty in our lives and how we should expose children with autism to uncertainty. How do we adults typically begin to overcome these feelings of uncertainty, and the resultant desire to resist and retreat to our comfort zones? Most of us like to venture into new things a little at a time, gaining a little knowledge at a time, seeking to find the balance between what we can tolerate as new and what we already understand and feel comfortable about. We never deliberately venture into the complete unknown, but many children with autism do this on a daily basis and we ponder why things have gone wrong and the child can’t cope. We often get them to do things without gradual exposure, prior warning or even choice. We then learn that they didn’t like that experience and we never repeat it again. Here’s an example: what would you think if you were told to get in the car, driven to an unfamiliar place and then told to get up on the back of a huge animal, you had never seen before? I’d say you would be pretty panicked and uncomfortable with the experience? I can say having worked in the field of autism for 16 years, I have seen this happen on countless occasions and because the child reacted badly, they are never exposed to that experience again. There is a huge chance that if gradually exposed to the experience of horse riding, that the child may have learned to love the experience. As adults we would never choose to be exposed to that level of uncertainty but we so often do it with children with autism and a result of their understandable reaction, we then start to limit their exposure to similar experiences.
We need to think about how the adult world manages uncertainty and expose children to uncertainty with the same degree of sensitivity. We need to recognize that we all feel more comfortable moving outside of our comfort zone when it is done in small increments, with plenty of time to adjust and acclimatise before taking the next step. Imagine learning to dive, by going to the top diving board first. Of course you wouldn’t do it, you start at the bottom and work your way up. You overcome your fear and develop competence gradually. This place of balance is known as “productive uncertainty”.
Productive Uncertainty is the place where optimal learning takes place for both adults and children with autism. For us adults, no uncertainty and no change translates as no learning opportunities however too much uncertainty leads to stress and chaos. For children with Autism, the picture is the same. No uncertainty and no change translates to no learning opportunities and an increased dependence on rigidity, whereas too much uncertainty leads as stress and chaos. Healthy development for us all requires a healthy relationship with uncertainty.
What I hope I have spotlighted here is just how interrelated the feelings of parents are with the feelings of their children with Autism. Both parties have been exposed to degrees of uncertainty that take them well beyond their comfort zone. All too often, we totally avoid exposing children with autism to uncertainty and change because of past failures and as a result place huge limitations on their opportunities to learn and develop. This well meaning over-compensation further limits the child’s exposure to and tolerance of the real world and creates a debilitating dependence on artificial living and learning environments. My experience however tells me that as parents become aware of the obstacles that their children experience, the less uncertain and more confident they naturally become. They can begin to see problems through the lens of the child. This insight can then be put to work in creating a more healthy relationship with uncertainty for their children, which opens up countless possibilities for learning and development for the child.
On a closing note, this is just my perspective….but I came across this inspiring guest blog written by a parent on the Autism Speaks blog. I believe it illustrates just this point. I do hope you’ll take the time to read it. http://blog.autismspeaks.org/2010/02/11/in-their-own-words-eller/
When we look for support in nurturing our children with Autism, we are prone to look for easy step-by-step instructions for how to teach children with this disorder. We quickly find that we are disappointed and that no such advice or quick-fix is available. There is no one course of action that can universally solve all of the child’s growing and developmental difficulties.
Having worked in autism for 16 years with children and adults on all parts of the spectrum, I have learned one thing that really does drive growth and development. It is the one vital piece of information that parents must keep in mind when teaching and supporting children with Autism - far more important than any strategy, curriculum, product or piece of information out there – and it is this:
It’s all about YOUR attitude!
The attitude that parents and teachers bring to the experience of supporting and educating children with autism determines the amount of success that will be experienced. An attitude of embracing uncertainty and viewing it as an opportunity for growth and development drives success. One of fear or resistance towards the uncertainty that the experience brings only hinders the family’s acceptance and the child’s development.
What I hope you will find as you read through this, is that the way you understand your child’s disorder and the obstacles it presents can give a whole new outlook on your work with your child. What underlies many of the negative and fearful thoughts that accompany an autism diagnosis is a pervasive sense of insecurity about the unknown. Having a child is a huge challenge in itself but for most of us these are healthy challenges that are born out of our own choice and our love for life. Having a child with autism presents a completely different challenge. The challenge no longer feels healthy and it certainly was not a choice.
I call it The Fear.
The Fear
This sense of insecurity is perfectly natural. We like to be in a comfortable place where we understand what is happening around us, know what to expect and have a sense of control about what is happening to us. That is what makes us feel confident and secure, and provides a setting in which we can thrive. This is completely natural; but we need to challenge this preference when our parenting boat gets rocked by the challenge of parenting a child who is the often epitome of uncertainty, unpredictability and loss of control.
As I see it, we have 2 choices:
1. Embrace the uncertainty and rise to the challenge; or
2. Continue to live in a place of fear that prevents us from proceeding down a path of overcoming our feelings of insecurity and helplessness.
Let’s examine this fear a little more. Have you considered that the same fear of uncertainty and feelings of incompetence that parents feel is a direct parallel to the life experience of children on the spectrum? Think about it. One of the main characteristics we see in children with autism is their difficulty managing uncertainty. This is reflected in multiple behaviours, be it avoidance, aloofness, passivity or aggression. You’ll notice that the common thread of all these behaviours is an inability to manage uncertainty, which then leads to fear and, very often, resistance and a retreat to more comfortable and consistent experiences. Its clear that there’s a definite connection between how parents feel and what children themselves are feeling. The feelings are similar and are often the same when we venture into the unknown.
Making this realization has an upside: you have much in common with your child and can connect with them on a much deeper level than you realise.
The key is to get in touch with your own response to uncertainty and to look at the child with autism through this lens.
In doing so, you will gain a whole new perspective of what they are experiencing and why they so often behave in the way they do. The child will often feel incredibly fearful and incompetent because there is so much unknown and uncertain throughout their day. This often leads to resistance in an effort to get back to a place of comfort and stability. Sounds familiar, right? After all, its a totally normal response. Have we not all experienced this many times in our life? You can now see how you can begin to conceptualize the behaviours, the emotions, and responses of these children in way that makes sense on common human level.
Baby Steps
There are also significant parallels in how we as adults relate with uncertainty in our lives and how we should expose children with autism to uncertainty. How do we adults typically begin to overcome these feelings of uncertainty, and the resultant desire to resist and retreat to our comfort zones? Most of us like to venture into new things a little at a time, gaining a little knowledge at a time, seeking to find the balance between what we can tolerate as new and what we already understand and feel comfortable about. We never deliberately venture into the complete unknown, but many children with autism do this on a daily basis and we ponder why things have gone wrong and the child can’t cope. We often get them to do things without gradual exposure, prior warning or even choice. We then learn that they didn’t like that experience and we never repeat it again. Here’s an example: what would you think if you were told to get in the car, driven to an unfamiliar place and then told to get up on the back of a huge animal, you had never seen before? I’d say you would be pretty panicked and uncomfortable with the experience? I can say having worked in the field of autism for 16 years, I have seen this happen on countless occasions and because the child reacted badly, they are never exposed to that experience again. There is a huge chance that if gradually exposed to the experience of horse riding, that the child may have learned to love the experience. As adults we would never choose to be exposed to that level of uncertainty but we so often do it with children with autism and a result of their understandable reaction, we then start to limit their exposure to similar experiences.
We need to think about how the adult world manages uncertainty and expose children to uncertainty with the same degree of sensitivity. We need to recognize that we all feel more comfortable moving outside of our comfort zone when it is done in small increments, with plenty of time to adjust and acclimatise before taking the next step. Imagine learning to dive, by going to the top diving board first. Of course you wouldn’t do it, you start at the bottom and work your way up. You overcome your fear and develop competence gradually. This place of balance is known as “productive uncertainty”.
Productive Uncertainty is the place where optimal learning takes place for both adults and children with autism. For us adults, no uncertainty and no change translates as no learning opportunities however too much uncertainty leads to stress and chaos. For children with Autism, the picture is the same. No uncertainty and no change translates to no learning opportunities and an increased dependence on rigidity, whereas too much uncertainty leads as stress and chaos. Healthy development for us all requires a healthy relationship with uncertainty.
What I hope I have spotlighted here is just how interrelated the feelings of parents are with the feelings of their children with Autism. Both parties have been exposed to degrees of uncertainty that take them well beyond their comfort zone. All too often, we totally avoid exposing children with autism to uncertainty and change because of past failures and as a result place huge limitations on their opportunities to learn and develop. This well meaning over-compensation further limits the child’s exposure to and tolerance of the real world and creates a debilitating dependence on artificial living and learning environments. My experience however tells me that as parents become aware of the obstacles that their children experience, the less uncertain and more confident they naturally become. They can begin to see problems through the lens of the child. This insight can then be put to work in creating a more healthy relationship with uncertainty for their children, which opens up countless possibilities for learning and development for the child.
On a closing note, this is just my perspective….but I came across this inspiring guest blog written by a parent on the Autism Speaks blog. I believe it illustrates just this point. I do hope you’ll take the time to read it. http://blog.autismspeaks.org/2010/02/11/in-their-own-words-eller/
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