Autism or Empathy Disorder?

Last week was Jake’s six monthly appointment with his consultant.

As usual he had his weight, height and blood pressure checked. His height has gone up from being 124.1cm in September to 125.8cm and he has gained a bit of weight and is now 20.4kg compared to 19.6kg in September.

His consultant wasn’t too happy that his weight wasn’t up more, as he is slowly going down on the charts again, but we are trying everything we can to get it up but it’s difficult. We want him to have a healthy, balanced diet – yet we are being told (in front of him!) to give him whatever foods he wants, as he needs the calories. That means that he just wants to eat junk constantly. The medication he is on doesn’t help as it can suppress the appetite. We always ensure he has breakfast before he takes his tablet, but lunch and dinner can be a struggle.

We are also finding that his medication hasn’t been lasting as long. It is a slow releasing medication, which should last around 8 hours. Unfortunately, we are only getting around half of that if we are lucky.

He did trial a seperate drug alongside his current medication last year, but it didn’t work on him. With our concerns in mind, his consultant has decided to change his medication and up it by 10mg. Again, it is a slow releasing drug, but it lasts for around 12 hours, so we should *hopefully* see at least 6-8 hours out of it!

We also discussed the behaviour that Jake is increasingly showing. When he was first diagnosed with ADHD and ODD we were told he has traits of Asperger Syndrome, but the consultant was reluctant to diagnose at that stage. I brought it up with her at the appointment as I truly believe that there is more to him than just ADHD and ODD. Do I think it’s Aspergers? possibly, although he shows more signs of it being Pathological Demand Avoidance (PDA) which is similar and also on the Autism Spectrum. However, his consultant was reluctant to tell me much about it.

She agreed that we could start the process of getting an Autism diagnosis, and has given us the Australian Scale Questionnaire to give to his teacher, however she believes that he has more of an Empathy Disorder than Autism. She told us that they are discovering that a small percentage of children with diagnosed ADHD have an Empathy disorder which can portray itself as being similar to Asperger syndrome.

She explained that children with Asperger find it hard to empathise because the brain cannot process how to, that they just cannot read the faces of people socially. She went on to tell us that ADHD children with an Empathy Disorder just do not have empathy. It just does not exist in their brain make up. This means that we have to repeatedly try to train Jake to read social signs and realise when he needs to use empathy, which is hard work!

We are waiting for his teacher to get the questionnaire back to us and then I am to call the consultant and discuss his results. So we will see what the say!

I really don’t know what to think or how to feel….I just know we still have a very long, hard, disruptive and futile road ahead.