It was in April 2009 that the signs of our son having any developmental issues in comparison to his peers became clearer. This was the point when we were told to not call him baby names as it was confusing him and making him think he was still a baby! In September 2009 we were informed we should seek advice from our GP and ask for a referral to the local Multi Disciplinary Team at our Community Hospital and in February 2010 we were informed he was likely to be on the Spectrum. Later in December 2010 we were given the diagnosis of High Functioning Autism, possible ADHD and definite Sensory Issues.
Initially I thought he had ADHD for his inability to stay focused and especially so with his later outbursts towards his Year 1 class teacher. He was going through stages of just staring at the wall and not responding, so at that point I was adamant he was having absence seizures which would have also accounted for his delay in development. During the assessments and whilst switching from one possible diagnostic idea to another I started to think that maybe he did have an ASD – mainly Aspergers, but wasn’t ready to put my neck out and let his teacher know that’s what I suspected, so continued with my previous suggestions and waited.
In February 2010 the Paediatrician said she thought our son was on the Spectrum and would be seen now by the ASD Multi Team to confirm. She’d spent 6 months liaising with us and the school to see how he developed and improved, realising that with all the evidence at that point the school wasn’t just being harsh (well, not in that sense anyway!) she passed us over to the rest of the team.
You can imagine the amount of web pages I went on to try to self diagnose our son; this ranged from ADHD, ADD, Sensory Processing Disorder, Absence Seizures through to Dyspraxia, Autism and Aspergers – if you create a search now, nearly every page that pops up that is more than a year old, I’ve probably read snippets of or all of it.
Night after night I read and read and picked out traits that matched this diagnosis and that but never quite fulfilling everything or the traits crossed over from one disorder to another. My husband was getting fed up with my need to keep looking and reading when even the professionals didn’t know and would refuse to listen to anything I said about any disorder that our son might have. His view was that until our son was given a diagnosis, he wasn’t going to stress himself out about it by reading things that possibly had nothing to do with him.
This is where he and I differ; I like to read all, everything there is – I need to know about every disability, I need to understand although in many ways I’ll never fully be able to relate with someone with it, but I can relate to the thought of it and any aspects similar that I see in me.
Once we finally had our diagnosis, I read book after book until what I was reading was duplicated information and a waste of time – at that point I gave up for a while. I read the following books from March 2010 when we were told he was likely to be on the Spectrum, until February 2011 when I re-started my higher education. Until then I soaked up all the information like a sponge; my hunger for information was enormous…
Reading list: –
Sensory Perceptual Issues in Autism: Different Sensory Experiences – Different Perceptual Worlds
Communication Issues in Autism and Asperger Syndrome: Do We Speak the Same Language?
The Way I See it: A Personal Look at Autism and Asperger’s
The Out-Of-Sync Child
Carol Stock Kranowitz
Sensory Processing Disorder Answer Book
Organize Your ADD/ADHD Child: A Practical Guide for Parents
Cheryl r. Carter
The Autism Sourcebook: Everything you need to know about diagnosis, treatment, coping, and healing
Karen Siff Exkorn
I also read a few others but cannot find their details and can’t remember their names to search specifics but one was similar to the Ellen Notbohm book ‘1001 Great Ideas for Teaching and Raising Children with Autism or Asperger’s’ but about sensory play and not Autism.
I’m now on a break from my study until the middle of this year and for Christmas put a load of books on my wish list that I had read and wanted to keep or hadn’t read yet and wanted to.
Currently I’m reading: –
Understanding Pathological Demand Avoidance Syndrome in Children: A Guide for Parents, Teachers and Other Professionals
Phil Christie, Margaret Duncan, Ruth Fidler and Zara Healy
The following on my ‘to read’ list that I got for Christmas: –
to re-read: The Out-Of-Sync Child
Carol Stock Kranowitz
Thinking in Pictures
Emergence: Labeled Autistic
to re-read: Sensory Perceptual Issues in Autism: Different Sensory Experiences – Different Perceptual Worlds