Once upon a time , there was a very clear picture on the way Autism is diagnosed, and in some areas of the UK there still is.
There even appears to be an existing comparison between the High and Low end of the Autism Spectrum, that exists both in the Professional world and the Parenting world!
In our area, they have changed this, by making it simple. On Diagnosis, children are not marked as Low or High Functioning Autism anymore. They are diagnosed with simply Autism Spectrum Disorder or ASD. The one and only reason I know where my son is on the Spectrum, is because I researched it after Diagnosis, and because he has an added Diagnosis of Global Development Delay which, is only ever seen in the Low Functioning type! So, what was the reason for my Health Authority changing the way they diagnose Autism? I actually asked on the day Jay was diagnosed, and I was told it is because of the general assumption, that a child with Low end requires more care and is worse than a child at the High end. This leads to those with High- functioning or Asperger’s, potentially being left out and missing out on the vital help they require. This is because it is considered a milder form of Autism than the type my son has. Those who have the high end types and their Parents were left to fend for themselves, and to be honest with you all, I believe from the people I speak to, that this is still the case, even with the one type of Diagnosis being given to ALL children in our area.
I speak a lot to Parents in my area, as I am quite well known in my local town and people know I have been through the process. Every one of the Parents I know have children on the High end or Asperger’s Traits. This means I get to see the way they are treated at their Schools or by the Health Professionals, and how support in Education, for these high end children is thin and not constant. These children struggle at School, because their needs are not met. The Schools cannot get Funding for these children because they are not deemed ‘bad enough or severe enough’ to receive support and funding for extra TA’s or Educational and Health care Plans. This is happening everywhere and is causing a crisis, as I am sure many of my readers will be aware of. Obviously, the way we get diagnosed could be responsible for this, along with lack of Education and Training in Teachers.
For us, our path to support ran smoothly from the very start, as Jay is on the low end of the Spectrum and has Global Delay, therefore, help was always granted to us.
In some way, the type of Autism Jay has, can be worse than a child with High-Functioning in terms of the fact they are like two year olds and have little or no language. High end, typically are not delayed and generally do not fall behind in School and can take some of their care on themselves, however, this does not mean they can cope in the world! Often the children and young Adults on the High end are stuck in Mainstream School, with staff who do not understand their Special needs and who cannot support them all the day due to lack of funding and training, therefore these children are at a disadvantage already without the required help they so desperately need. They also have many of the Sensory issues and mental health issues that come with the Low end, yet they have probably a third of the support that severe children get. I know it may be a matter of money, but I do not accept this as a excuse, as there are too many children right now, who have supposed more milder forms, who do not even have a School place, or have help, yet children spend six hours a day in school, so to not put in the correct level of care and support in place for them is a disgrace to our nation and is letting down children and Families big time!
On the flip side to this, was our Parent Training course, offered after Jay’s Diagnosis, which we felt , covered Autism mainly linked to High-functioning. We attended six sessions and were the only parents present whose child was Low-functioning. By the time we got to the third class, we began to realise the course covered no references to globally delayed Low-functioning children and we felt left out and forgotten about. All the information we got came from books and the Health Professionals we worked with after this. I left honest feedback to the course tutors and told the truth. I said you have to cover more severe end children, as the whole course content dealt with many of the high-end traits like being exceptionally bright, and support in Mainstream school etc. The best thing we took away from the course, was an introduction to the Parent Liaison from Jay’s now attended SEND School and an early visit to this School arranged by this lady. So I am grateful for that. Generally speaking though, there is no need for the comparisons between the Spectrum ends because all of the types of Autism including rarer forms such as PDA ( Pathological Demand Avoidance) and also ADHD, require the child to receive good all year support so that they can reach their full potential, and that after all, is what the legal SEND requirement is for all children, although we all know it isn’t happening!
Jay’s Low-functioning Autism causes him many of the same challenges as upper end children. It is his Global Delay that challenges him the most. With lack of understanding of language and his surroundings, Jay is incredibly vulnerable and as I have told you all before , has no understanding of danger or his whereabouts or even who he really is.
Jay requires access to Sensory activities daily. Jay sees his teddies as real personalities, he chats to them in his own language, and includes them in his every day life. He even makes me ‘talk’ as them, asking ” Spinney and Crawly want to talk” I then have to put on a high pitched voice and speak as the Spider teddies he loves. I use them to teach him about the world. When we go out with Jay, we see Jay being spoken to as an Eight year old as he is very tall for his age and they probably imagine him to be ten! I was buying him an ice cream last week at the Railway café near our home, and the lady serving asked what flavour he would like. She addressed this question to him, and he of course did not answer. The lady waited and I spoke saying that Jay would like Strawberry please. I knew his favourite flavour and had to speak for him, as Jay will not look at, or speak to people, even his own family at times. He will give eye contact at times if its on his terms. The lady then said to me ” does he want a flake?” I think she had cottoned on at that point. I encouraged Jay to say thank you by saying ” say thank you Jay” Jay’s response was to say ” say thankyou Jay” Can you hear in that what he was doing? He was using ‘Echolalia’ -the repetitive use of random phrases heard in his life but not understood. Another trip out, we took Jay to a toy shop and once again the shop assistant asked him a question that was perfectly in line with what she thought his age to be by his height. This time I said to the lady in question, that Jay would not answer as he has Autism. I just had to say it. I do not go around telling just anyone trust me, but sometimes it is necessary as people just look so offended that the child has ignored them and I also feel the general public should know so as to be more educated about Autism. If Jay has his Ear defenders on, people tend to know something is going on, yet if he does not it is an invisible Disability and they then react in a quite different way, than if the Ear Defenders are on him thus announcing that there is Special need there. On the other hand it is nice when people speak to Jay and I certainly would not want him to be ignored. I just wish Autism and Global delay were more understood, in all forms and in every way.
One of the things I love the most about Jay, is his ability to see the world in complete black and white. An ‘absolute’ place, where the rules control the fun, and where he can look in detail at the beauty around him. Jay is probably the most challenged young person in my big family, yet his life is simple, consistent, and straightforward – it is the neurotypical people of the world who complicate life and make what should be a happy place, at times unhappy. I love, that to Jay, the whole world around him is his playground, and a wonderous, amazing, and beautiful place in which to live. I sure wish I could see the world through his eyes and that the world was truly like that. Yet we can all learn something from the people of the world who have Autism! That is, to appreciate what a stunning world we live in, to look for the beauty it offers, and to keep alive a warm and happy spirit and a loving heart -appreciating all that we have and all that we know to be good and right in this muddled world of ours!
Next Time: The Calming effect of Technology on the Autism Mind!- How Jay uses technology as a calming mechanism.