Did you know that Dan Ackroyd has Asperger’s and Daryl Hannah has an Autistic Spectrum Disorder. They have gone public in support of World Autism Week, and a Media Parents mum has written for our blog about her experience of Autism.
It’s World Autism Awareness Week and for the first time we are starting to see the world as it is for our 7 year old. She has recently been diagnosed with an Autistic Spectrum Disorder, in a milder form than others, but still presenting challenges for a parent on a daily basis. Simple things such as being ready to leave the house for school can be so difficult, yet it had never occurred to me why until we attended a workshop designed to support parents with ASD children.
We have been lucky enough to take part in a five week parental workshop run by a school that only has pupils with ASD (our child is in mainstream education elsewhere). I realised children on the spectrum process things differently to non spectrum children, but the insight provided by the facilitator’s husband, who has Asperger’s, gave a down to earth perspective that made the penny drop. We process everything around us, conversations, noises, smells, with very little conscious thought or effort, however everything surrounding a child with ASD requires a huge amount of processing often resulting in a considerable stress for them.
The husband describes an ASD person as an old fashioned filing system and a non spectrum person like a computer. If we want to find out some information we click Google and type something in, get instant options as results, quickly scan and click the one we want, read it and move on. A person with ASD has to walk to the filing cabinet, open it, search though all the sub files, pull out the correct one, sit down and read it, find the correct place to return it and close the cabinet. Never again will we lose our patience when I say “Come down, put your socks and shoes on, get your coat, its time to go. Hurry up!” I honestly believed this to be one thing I’m asking but to my 7 year old it’s seven separate things ! When five minutes later none of those things has happened I now know she is still processing the first thing “Come down”!
We wont profess to understanding the condition yet, but being introduced to a support person who has personal insight and experience is invaluable in understanding more. We can all look up facts about things but sometimes applying those facts to our own situation can be a bit overwhelming to say the least. Add to that that those facts on ASD are all based on boys and their symptoms and behavior – very few girls have been studied and they are a very different kettle of fish. Boys usually present quite distinctly whereas girls will watch their peers and become very good at mimicking and copying to fit in, thus “hiding” the symptoms. They are all about emotions which makes it harder to spot and trickier to deal with. We also learnt from the workshop that every single thing they get upset about is for a reason. It is NEVER over nothing and it requires the day or moment to be unpicked in fine detail to determine the trigger and deal with it. Hard enough in itself but we were then informed the trigger may not be the situation that you are in when you have the meltdown and upset. It may have been something four hours earlier but they have only just felt able to release their feelings!
If you are going through the assessment process or you have already been given a diagnosis don’t keep quiet. There is support out there but due to a huge lack of funding it is very under resourced and you need to keep shouting till you find it. It took two years to get to where we are now and I have been on the phone a lot to all the different departments involved pushing for information! If you do have a girl who is going through the pathway it is worth searching recent research done on the difference between the sexes. Ask your Speech and Language therapist if she knows of any particular research that has been published. Not one person could believe our daughter has been given this diagnosis, they all think she’s incredibly easy to talk to and grown up. She has copied her parents well obviously!
Please do visit http://www.autism.org.uk for more information. There is a stigma surrounding Autism largely due to lack of knowledge. Use this week as a reason to find out a bit more!