Diagnosing autism - services need to be increased, not reduced.

If you are a regular reader of my blog you probably know that my two boys both have a diagnosis of high functioning autism, sometimes called Asperger Syndrome. 

My boys are very different, both have different needs but thanks to some great support they are on their way to fulfilling their dreams.

It was not always like this.  Our journey to diagnosis for the boys was long, convoluted and costly.  In many ways it was so much easier with Daisy, her disability was so extreme and obvious the support clicked into place immediately.

It’s different with the so called “invisible disabilities” however.  The lifelong neurodevelopmental disorders that fall within the autism spectrum are difficult to spot and children can fall between the cracks in our broken system without the support they need.

The EHCP Process: An exercise in jumping through hoops?

Securing an Education, Health & Social Care Plan to support your child's special education needs feels at times like being forced to jump through hoops, over and over. Having been through this process recently I thought I should share our story, and my tips for getting through the process without getting burned.

I wrote last year about our youngest son and his diagnosis of autism spectrum disorder.  You would think, being the parents of a child with learning disabilities (and a syndrome associated with autism) as well as a highly intelligent eldest child with aspergers/high functioning autism, that we could have spotted it a mile off.  But the reality is, just as I tell the professionals, every child is different, every child presents differently.

So Jules has an official diagnosis of Asperger Syndrome (now commonly known as high functioning autism).  His issues are very much around anxiety and he has speech and language and executive functioning difficulties which in a nutshell have meant that transition to a huge London high school from a small suburban primary was overwhelming for him.

Another brick in the wall

Today we sent a letter to our local education authority, we have made a request for yet another of our children to be assessed for support for special education needs - that's 3 out of four of our children who learn differently, who need support to help them access education and achieve their potential.  Realistically though it should only be one of my children who needs this extra help - Daisy is the one in special school with a learning disability, visual impairment and highly complex medical needs which limit the time she can spend in school.  It's completely logical that she should have a statement and funding assigned to her to help her reach her potential.  But my boys, differently wired, with their own unique learning styles, they have high IQ's, they are eager to learn, they just learn differently - the way they do things, their idea of success and achievement, it's totally out of kilter with our modern day, sausage machine education system.

Aspie Christmas Everyone!

I love Christmas.  I love the preparation, the carols & cheesy songs, the parties, the socialising, the decorations - in fact I guess I'm a bit like Buddy from the film Elf when it comes to Christmas.

Parental Guidance Required

I have four children, their current ages are 16, 14, 11 and 8.  In the eyes of the law however my eldest child is in a grey zone, hovering between adolescence and adulthood.  You see I have recently discovered that the years between 16 to 18 mean different things depending on what you are looking at.

When Theo turned 16 he proudly reeled off the list of all the things he could now do:-

Ride a moped, buy a lottery ticket, drink alcohol if it is with a meal, fly a glider...

That was the interesting stuff.

But what about the other stuff?   The stuff we really didn't think about until it started to impact his life.

Why vaccination is a no brainer for me

There is currently a measles epidemic in South Wales.  Measles epidemic?  A disease that was almost eradicated in the UK? But we have a UK wide vaccination programme - how can it be possible?

How can it be that  the UK had the second highest number of measles cases in Europe last year with 1,902 confirmed cases  not including the new cases in South Wales?  (The European total was 8,230).

It seems in the UK we are still paying the price for the scaremongering caused by the flawed "research" by Andrew Wakefield claiming a link between the MMR Jab & autism. His hypothesis is that he found a new form of bowel disease that was only present in autistic children and he linked this to the MMR jab.   And so he opened Pandora's Box as parents made the connection between MMR and Autism, despite the original Wakefield report being shown to be completely flawed, the author to have multiple conflicts of interest and to have manipulated evidence, despite Andrew Wakefield being struck off the Medical Register by the General Medical Council. Despite multiple studies which showed no link between the MMR vaccine and autism the seed of doubt had been sown in the minds of otherwise intelligent people.

This be the Verse....

I remember being about 8 months pregnant with Xanthe , Theo had just turned two, I was wracked with guilt about bringing another child into the mix and turning his world upside down.   How could I share my love for him with another? Would things ever be the same

...these feelings of guilt are what many mothers feel when they think about or go on to have a sibling for their first child, it's that fear that we are not doing the right thing by our child, that they only get one shot at a childhood and our actions or inactions would ruin it for them...

It was a similar feeling in 2004 when we were told at our 10 week scan that we had a 1 in 4 chance of having a  child with Downs.  My first reaction was that we had ruined the children's lives, that things would never be the same, that the dreams and hopes and plans I had for my family were all shattered...

A letter to my son.....

A couple of weeks ago, someone somewhere googled “I Wish I Didn’t Have Aspergers”. The phrase popped up in a blogging dashboard and struck the blogger as being particularly sad. She wished she could have answered.


The result has been an autism positivity flashblog, going out today, 30th April, where bloggers who write about autism and aspergers write a post which hopefully anyone googling "I Wish I Didn't Have Aspergers" would find support and encouragement from a whole community of people who understand, or are trying to understand...

"I wish I didn't have aspergers" is something I guess my son has said,or thought, or googled at some time so I thought I would write the letter that I would want him to see if he felt so low that he had to type in those words to see what came up...

Dear Theo

I remember when you were born, our first child, our boy, our son. We were filled with hopes and dreams for you, Daddy wanted you to be an Arsenal Striker, Fighter Pilot and Doctor all rolled into one (it's OK, he wasn't serious, well maybe not about the fighter pilot bit...). But what we wanted most for you was to be yourself.

The Adapted Family

I'm participating in the Define Normal Blog Hop this week where the challenge has been given to us special  needs mums to define what we consider normal in our lives and embrace the things that make us different to other families.

I was thinking about this and started remembering stuff I learned a long (very long) time ago at University when I was an undergrad studying Social Anthropology.  My interest was specifically how peoples adapt to their environment and how communities evolve to take into account the external influences of their environment.  For those of you who are curious, my dissertation was on the significance of the Potlatch Ceremony among the Kwakiutl peoples of the Pacific North West....but that is all another world away..

So I was musing on the blog hop topic, which focuses on the things we take for granted as special needs families which may be perceived as weird or odd in the wider world and I realised that what we all do is adapt, what actually is "normal" anway?  The only thing that is actually normal is a cycle on the washing machine... we have all adapted to fit our own influences that shape our family.  Things that I take for granted like putting a tube into my daughter's tummy to empty her bladder are clearly a bit away from the norm for any 7 year old, but we have adapted our lives to accept that if she is going to avoid urine infections this is what we need to do.  The normal for us is that way because our family has adapted to survive as a unit around the demands of the needs of the individuals in it.  We all do what works for our family unit, regardless of whether or not there are additional needs.

A different operating system

The quote above appeared on facebook a few weeks ago and for me it was a eureka moment, it encapsulated what life is like for a person with Autistic Spectrum Disorder, a person like my son, Theo.  In a moment I realised  what I had been struggling to articulate, that Theo is a Mac and the rest of us are PCs and we are trying to operate a Mac like you operate a PC....and if you are not familiar with these two operating systems it's like trying to manually change gear in an automatic car or speak French in Germany...you get my drift.  In other words the normal (what we perceive to be normal) rules do not apply.  When you have a child with Aspergers, many of the normal rules of parenting don't apply and you have to revisit how to parent in a way that can sometimes completely go against your instinct......