My child (a boy of 11) has always been a little bit, shall we say: tricky. A beautiful blue eyed, blonde haired boy with the typical mischief and curiosity but his moods and temperament were beyond me. There were no terrible twos however, from 4 upwards all my calming strategies, resilience methods and general everyday coping abilities had been tried and tested daily, weekly and continually.
At the age of 10, I sought professional help and it started the slow process (which we are still on), to receive the actual input we needed and sought so desperately. Then last October we had a game changer.
The first thing the professionals say now is “maybe the diabetes was the cause of all his behaviour” or “that explains a lot of the problems you have ben having”. Absolutely not!! Yes, his low and high bloods impact his behaviour; of course they do, but his behaviour has been around for a long time – his diabetes has not!
The Diabetes diagnosis initially seemed enough for the professionals to sweep us back under the carpet as an explanation for all behaviours, an easy way to save money on an assessment and save CAMHS the time but thankfully (a difficult silver lining to say the least), the whole hospital experience and managing diabetes introduced a new level of severity to his challenging behaviour and the potential life threatening risks.
Imagine trying to get a (large) 11 year to administer needles and injections to himself when he presents ASD behaviours. Think about the impact of his emotional and psychological health with the continuous explanations of “you need this or you could die”. A phrase which the numerous doctors, nurses, specialists, consultants and psychologists uttered to my boy to make him do this action which HURT (more than a typical child), which was SCARY (unable to process the emotions) and most importantly, he had NO CHOICE and an ability to say no.
One consultant, before making a nurse SIT on my son to administrator his insulin said to me “I have never seen a child act like this, not even the toddlers”. I wanted to scream from the roof tops – this is my world! This is my boy! This is my life!
Help him don’t force him, understand him do not generalise him and support us because I was the parent who was then subject to a safeguarding report by Social Services as a risk to my son because I may not be able to maintain his medical needs.
There is much, much more to this story; some good but predominantly bad. However, and very fortunately, the experience did get us moved up the assessment waiting list (that funny silver lining) and we are due to receive the help we needed years ago.
Subsequently, I have found little literature supporting a Diabetic child who has ASD although there must be many more cases and I would love to hear from any parents who have gone through similar experiences.