Why I hope I would still have my kids

So when I say to people, "I think three is enough," they look at me as if I'm mad. I have three beautiful children and yes, two of them happen to be autistic. I was sparked into considering the possibility of their non-existence by a recent approval for a Down's Syndrome test.

Art Neuro?

It's been well over six months since I raised the question with our various health professionals. We know our son Anthony has autism but does he also have Attention Deficit Hyperactivity Disorder (ADHD)? So how come it was only today I came across the term neuro-disability.

Anthony has been diagnosed with autism, or autistic spectrum disorder (ASD), since he was three years old.  This confirmed his difficulties in lots of areas such as language, social interaction and also sensory processing.  Both Anthony and his younger brother are sensory seekers and demonstrate sensory seeking behaviours.  They move their bodies an effort to 'feel' right.  Constant spinning, flapping, and in Anthony's case jumping to settle their sensory system. 

At school Anthony leaves his classroom several times a day for movement breaks and as he has grown I've wondered whether his constant moving and lack of interaction could partly be due to also having ADHD.  Many kids with ASD  have comorbid conditions, one's that are likely to co-occur and having both ASD and ADHD is quite common indeed.  Practically if this meant Anthony should be getting different support to help him function at school then I knew I should seek further advice and a diagnosis if needed.

Our appointment with the Neuro Development team was today and could be described as dull at best.  I spent an hour answering the many questions that I've answered before and Anthony sat, tapping, tutting and eventually ended up on the floor. Despite me trying to involve him the conversation, the consultant hardly ever asked Anthony a question about himself.  Anthony was paying absolutely no attention anyway, yet another pointer to his potential ADHD. 

At the end of the appointment the neuro consultant talked a bit about 'neuro stimulus' and Anthony's obvious hyperactivity and said he'd be in touch again in a few days after talking to Anthony's school.  We started on our one hour journey home and after 15 minutes went back past a grand building called the Royal Hospital for Neuro Disability.  It suddenly occurred to me - have our kids had neuro-disabilities this whole time and I've never realised it? 

I don't know why but it doesn't feel like this is the right term to describe them.  NHS England defines Neurodisability is an umbrella term for conditions associated with impairment involving the nervous system.  The basic element of the nervous system is the nerve cell, or neuron.  There are billions of neurons in the brain and this along with the spinal cord forms the two main structures of the nervous system.

NHS England goes on to say that this includes conditions such as cerebral palsy, autism and epilepsy.  Other organisations seem to list different conditions.  I've not been able to find a definite list, but NHS England would say our son's have neuro-disabilities. I've always described Jane their younger sister as neuro-typical and  I've always been happy to describe my boys as having a disability but it seems weird somehow to say they have a 'brain' disability. Clinically, I guess it's true, their brains function differently. 

Obviously I'm not a neuro expert and I think I'll probably not be able to stop myself investigating this more. Most recently I came across the term neurodiversity from Steve Silberman's book 'Neurotribes'. Neurodiversity is an approach to learning and disability that suggests that diverse neurological conditions appear as a result of normal variations in the human genome and presents the idea that neurological differences should be recognised and respected as a social category on a par with gender, ethnicity and sexual orientation. Perhaps it is because I heard the term neurodiversity first that I find neuro-disability strange.  

Whether officially my boys are neuro-disabled or neuro-diverse, I guess all that matters is that my son's get the support they need.  That they are given the opportunity to reach their full potential and to lead their lives in the way they wish.  And so I'll wait to hear from the neuro development team as to whether Anthony needs an ADHD diagnosis and what we can do to continue to support him.  

Links
Our Blog - Hyper what else? (Co-morbid conditions)

External Links
NAS - Sensory
Neurotribes - Steve Silberman's website

Jane loves her autistic brothers

Jane is two and a half years old. Despite her young age she has already accomplished many more things than her older brothers.  This is because as yet, Jane is the only child in the family not facing the difficulties associated with a diagnosis of autism.   She's developing in a more neuro-typical way, talking in near sentences, enjoying social interaction and to my absolute joy, declaring love for her siblings.

Jane's eldest brother Anthony is seven and if you ask him if he loves his family he will tell you that of course he does. David is five years old and can tell you if he wants something, but not really if he either likes it or loves it. He is more likely to ask for a biscuit than his mother. This doesn't mean that the boys don't play with their younger sister. On the contrary, Jane being younger makes things easier for them.  Jane is able to be directed in play.  She will follow instructions and suggestions for play.  She's also up for anything fun like running around, wrestling and hiding. And she does it with an absolute joy than is infectious even to the boys. 

Don't get me wrong, playing with the boys can be challenging.  Both have sensory difficulties meaning than can be very physical in play. David can be fairly rough and his play repertoire is mostly adaptions of chase.  Anthony can be very demanding, games have to be played as he dictates and sometimes Jane has to put up with a fair amount of shouting when the simple rules aren't followed appropriately.  This is because Anthony enjoys repetition as it means he doesn't have to deal with the unexpected.  They were both diagnosed with ASD within a year when they were around three and four years old has meant we understand them better and are able to help them all play together.  Both boys also need their space too and it's not uncommon for poor Jane to be told 'I don't want to play with you right now.'

Jane had been told such a thing when I went to comfort her yesterday.  I asked her if she was sad because she liked playing with her brothers.  "Yes, I sad. I like playing with my brothers. I love them," she said.  Admittedly, she seems to 'love' everything at the moment. But despite this it was still one of those many times you have as a parent when you know you should have a sad face to show you empathise with your child but you've actually got a smile.  For despite her brother's behaviour being a bit odd, rough and sometimes seemingly mean, she still loves them, even at two and half years old.  I know she may find her brothers difficult to understand as she and they get older but I'll take a bit of love between them all right now. 

Links
Our blog - Normal Repetitive play, watching Jane's development
Our blog - Anthony's always aloud

External links
NAS - Sensory
NAS - Obsessions, routines and repetition

Comments from Steve Silberman on Neurotribes, our different 'autisms'

It's been a week since Mumsnet invited Steve Silberman to join them for a webchat on his book, 'Neurotribes: The legacy of autism and how to think smarter about people who think differently'.  His book examines the history of autism and looks at why there has been a recent rise in the number of diagnoses. It recently won the 2015 Samuel Johnson Prize for non-fiction and became a bestseller in England just over a week ago.