Jay at 2 before I knew anything was different about my boy! Different, not less!
Autism has been around for all time, yet it has taken until this last decade for it to be really understood and even accepted by the Professionals.
We hear from many uneducated people saying that it was not around in their day. Yes it was! It was just not understood. I remember children I went to school with, who I thought were just behind and slow, when actually ,they are now, grown up to be 40 year olds who quite obviously have Autism! I can think of at least 4 people who come in to this category.
Many years ago, Autism as we know it, was completely undiscovered. The research was obviously being done by some, as it was discussed as being “retarded” or being “handicapped”. Both are horrid words, no longer acceptable in our society, yet they were used to describe Autistic individuals in the past. Thinking about it, no word used to describe any one with difficulties is actually nice. If you actually break down the word ‘Disabled’ you get : Dis – abled. This means to disable-which actually renders an object unusable or broken. Another word used to describe people with difficulties is Invalid. Let’s disentangle this word, ‘In-valid’ That is even worse because it means something is not usable or needed! Awful! I think I prefer Disability and learning difficulty and Special Needs. At least these words cannot be split to create an insult!
In the 50’s and 60’s, the phrase ‘Refrigerator Mums’ was coined as a way of labeling these children and suggesting that Autism was caused by a lack of affection and secure attachment of the Mum to the child! Again, this is incredibly upsetting and perhaps was a phrase created by a man! If all else fails blame the Mum. NOT the Dad, the Mum! This got me thinking about the Duchess of Devonshire, who could not birth a male heir for the Duke of Devonshire. Instead of blaming the Duke, everyone said it was the Duchess’s fault she could not produce an heir. We all of course know now that it is the male who determines the gender of a baby! Why must we women be blamed, and having said that why does anyone need to be blamed? What an attitude and I am so glad I did not live in the 50’s or my Jay born in the 50’s as he would not have got any help and I would have been blamed for his condition!
Then we look further back to 1944 when Hans Asperger, described 4 children in his care of having difficulty in coping socially and with communication, and how this man coined the Diagnosis of Asperger’s Syndrome. At this time it was seen as a condition only, now it is seen by many as a great gift as People with Asperger’s often are very special,gifted and high performing individuals!
However we must be very careful, as in today’s media, we often see only High –Functioning and Asperger’s being represented, and this can lead to an incorrect assumption that ALL Autistic People can do well and achieve and work etc when those with very severe conditions such as Jay, cannot work or be independent. They can, of course achieve and are gifted in sometimes bizarre and special ways, however it is understood that they will need caring for their whole life. On the other hand, it is important to understand that those of High- Functioning Autism, and Asperger’s can also really struggle in the world and often need just as much support as the Low end. No assumptions should ever be made in relation to the severity of all three of these types of Autism.
In the 80’s the movie Rainman did a lot to aid understanding of Autism. The extreme cleverness shown by the main character, helped people to see how these people’s brains were so advanced and developed, even though their development was so delayed. My son Jay has shown these traits at times. For example, when the main character with Autism, counts the toothpicks that have been dropped on the floor, knowing immediately how many there were, this is something that we witnessed in Jay one day when we were eating tea in our kitchen. Jay had been sitting near the Now and Next board we use and on it are lots of pictures of every day events and tasks. One of them fell off and Jay looked up, and said “59.” I asked him what he meant, and he said it again. “59” I then looked at the board and I counted the cards. There were 60 on the board, and one had dropped off! I realized that he knew how many were there without counting them out loud! Jay also began to count in 3’s 4’s 5’s and 6’s before he had been taught this at School. The teachers were amazed as they had only began to count to 20, and already, after a week in Reception, Jay could count in all these numbers up to 100 and back down to 0. This is a different level to Rain man but a similar thing, in that these Maths skills in Jay were not in line with is his Global Development Delay. Rain man is often the most obvious connection people tend to have with Autism. I have actually heard people say it. It is not a bad thing, but as I said before, the danger with Autism is because its a spectrum condition, one cannot presume to label all people with it in one way. Not all High-Functioning People have the same skills as Rain man, and not all Globally Delayed Low-Functioning People show no skills or gifts. There is not a one size fits all with Autism, and this we are sure about!
Recently I read a lot about a certain celebrity with Autism, and how she had certain skills and over-came difficulties caused by Autism, to socially integrate in the jungle with others. However, the same attitudes were filtering through the online discussion, and that is if SHE can do it why not others with Autism?Here we have the difficulty and danger once again, that if people see one type of Autism, then they believe to know it all and judge all Autistic people the same way! Surely, if Autism is to be in the media it should be clearly represented from all types?
Pathological Demand Avoidance and Attention deficit Disorder- PDA a sub-type of Autism first discovered in the 80′ s by a Professor, who noticed different traits in certain children, who showed an over-whelming need to avoid and resist demands. PDA is now acknowledged, and some Professionals are aware of it, but many Teachers have never even heard of this form of Autism, and only in special Schools is it understood. I know Parents of children with Attention Deficit Disorder who are constantly dealing with degrading and irresponsible, and at times ,rude comments from the public who generally believe that the children displaying this condition are just plain ‘naughty’ and that its lack of discipline, or bad parenting. These attitudes are so damaging to both the children and their parents, and can lead to feelings of low self worth, and loneliness and isolation. This is another condition that is not widely understood in Schools too, and along with PDA and all forms of Autism, a long road lies ahead before we have full understanding and acceptance of these complex and varying conditions that all link to the Autistic Spectrum.
Even though we have come a long long way since the days of Refrigerator Mums and Mental Institutions in this country, there is still a lot to be done, before our Special children have full acceptance and understanding and also the support network they need in which to truly flourish and grow. I do believe that, after being warned that Jay may never read ,write or talk, only to find Jay is now reading , writing and attempting language , that it proves that we should never just ‘accept’ our children’s supposed fate, without first showing faith that we have the power to change their fate. We do this by offering the best support we can, fighting for their right to a full proper education, and being their teacher and voice in the world they must move along and achieve in! We have the power to choose! We can sit back and say oh well they cant do it, or we can show them that they absolutely CAN do it with some help and support and a lot of love from their family. Because if we do not believe in them how can we expect them to believe in themselves or see others believe in them?
With all the support we have , I am relieved we live in these times, yet i find myself wondering how things will be in say twenty years time? Let us hope things will have again moved on .That awareness is much greater, and relates to the actual people of this world with Autism in any form, and that those individuals will be honoured, valued and supported to meet their full potential always! Not just left on the shelf, because the way things are at the moment in Education for Special Needs it is abysmal, with no understanding from staff and children left without education because not one staff member knows anything about the condition they have! That has got to change and hopefully in the near future not in twenty years.
Jay continues to be well cared for in his Special School and is fully supported by us and also by our team of Respite Workers, and so Jay is lucky and I realise this. Would it not be the desired outcome of ALL children with Special Needs to have this same network where ever they are?
Yes! We have a long road ahead!
Jay with one of his number charts to add and subtract. Jay in his fun chicken hat
Next time: Literal, rigid and analytical thinking in Autism.