Everyone deserves the best medical treatment possible at all times. No life is worth less than another. What happens though when someone can not understand treatment, or convey pain, or communicate…should they be treated differently?
Here is my story.
My son is seven years old with a diagnosis of non verbal severe autism, learning difficulties and Neurofibromatosis type 1.
Let’s stop there and make this much more personal. Here is Isaac, a cheeky, lift loving, teddy chewing, energetic, loving seven year old.
Isaac has had some major medical tests recently to help find out more about what is going on in his body and mind given his medical condition and difficulties communicating.
He had an EEG. This came back abnormal.
He had an MRI under general anaesthetic. Yesterday we had the results. He has microphthalmia is his right eye which means he has no vision at all in that eye. His left eye has an optic glioma, a type of brain tumour.
As I said Isaac has severe autism. Should this affect how he is treated for his optic glioma?
We have two options at present.
The first is watch and wait. The tumour may never grow and his vision may remain stable. No-one really knows.
This option relies on regular eye tests, regular MRi’s and the patient communicating any changes to his vision or health.
This is where autism poses a problem. Isaac has yet to be able to carry out a conventional eye test. He shows no interest in picture cards, can not identify numbers or letter consistently and has no means of communication or even understanding any changes to his vision. MRI scans involve general anaesthetic and therefore come with risks. The MRI can identify any tumour growth but has no way of knowing any symptoms the patient may be having.
Should my sons autism affect wether we take the risk of watch and wait?
The second option is chemotherapy. That comes with huge risks and is highly invasive. Isaac would have no understanding of the medical treatment and struggle with any changes. We would once again have no knowledge of how it would be affecting him as he has no language. This could make managing the treatment very problematic and challenging.
Do we risk chemotherapy on a child with such limitted understanding and awareness?
Before any of this happened to me I would have argued that no child should be treated any differently medically just because they have autism. The fact is you HAVE to treat them differently.
Whatever decision is made by my sons medical team in the next days and months will all come down to his autism as much as his medical challenges.
I trust my sons team. He has some very skilled medics on board but there will also be communication specialists too. Why? Because his autism DOES affect his medical treatment in a very big way.
I stand by what I said at the start. EVERYONE deserves the best medical treatment available at all times. It is just, in my sons case, autism has a major part to play in what the best medical treatment is. That is a fact we can not ignore.
The decision is somewhat out is my hands. Isaac has no say in it either.
Autism affects so much about my child and in his case it affects his medical treatment too.
I am so grateful for doctors who understanding this.