Was it something I said?

In a world where everyone has an opinion about everything and the most sensitive subjects are banded around the media, with no due care for the consequences, I am often blessed with hearing about why Christopher might have autism, sometimes from complete strangers! I do enjoy these conversations…about as much as I enjoy going to the dentist.  At least at the dentist you usually have your mouth held in a position where you cannot inform the opinion holder of their arrogance and narrow mindedness.  Unfortunately, away from the dentist, I do find I need to purse my lips with extra force so as not to shout obscenities in the direction of the speaker.

There are a few schools of thought that crop up frequently.

The first, is that the vaccinations (MMR) a child has as a baby leads to autism.  Despite the fact that no medical evidence has ever been found to link the two, people still discuss whether this could have caused it.  A family member even called me to ask whether or not I felt that Christoher’s autism was caused by the MMR and did I think they should vacinate their child?  To say that I was flabbergasted by the conversation would be a huge understatement.  If in doubt about vaccinations, pop over to google images and search measles, mumps or rubella. Then, come to our house and take a look at my son, he is healthy, strong and strikingly handsome.  I know which I would prefer! I may well pull my hair out on occasion but my son is not dying and my choices as a parent are not putting other children’s lives at risk. If only there was a vaccination that would prevent people falling victim to hysteria!

Secondly, and by far my favourite of all- “I Don’t believe in any of those things”(Those things, being autistic spectrum disorders)….Or, “Those things didn’t exist a few years ago”.  There have been moments, upon hearing either of these two nuggets of wisdom, that I have wondered whether my head has taken on the motion of the famous head spinnining scene from the Exorcist.  I am fairly certain that I have evolved in a way that allows my eyes to glow red at least!  Indeed, there has been a marked increase in the numbers of children who are diagnosed. Surely common sense must prevail here. Could it be that autism is not increasing, but that schools and parents are all becoming for more aware of the possible signs and in turn, health professionals are becoming better at diagnosis?  To those people who ‘don’t believe’, absolutely fine, I imagine that when Aristotle first discussed the world not being flat he would have met people who did not believe! Incidentally, it has long been felt that Aristotle probably had Aspergers syndrome, a high functioning form of autism.

There is a school of thought that genetics play a role in the cause of autism. As a parent, this is a challenging theory to contemplate; I almost feel that it suggests blame and has certainly led to some finger pointing within our family.  Scientifically, there is a strong genetic link and autism does tend to run in families.  The actual genetic markers for autism are highly contested and will be under investigation for a very long time.  When I consider this theory as a cause of my son’s autism I can certainly place certain behaviours and characteristics to both myself and my ex husband.  I am creative, hot headed, audacious and a little bit socially awkward, whereas my son’s father is Logical, stoical, highly intelligent and through his career has become quite the upper cruster!  We are complete polar opposites and our relationship reflected this.  However,  we managed to create an amazing little person who carries the best and the worst parts of our personalities.  Indeed, we have a name for this mismatch of personalities and we call it autism.  So if we are to ‘blame’ for passing on our genes and creating a ‘disorder’, then I for one am immensely proud!  There are of course the children and families at the other end of the spectrum, who do not interact at all, do not engage with their parents or the wider world; For those parents, to hear suggestions that the autism has been ‘passed on’ like a common cold, must be exasperating.

There are many more reasons that I have either heard or have read about the cause of autism.  I have a theory of my own, based entirely on the thoughts in my head.  I do not have a laboratory, I am not a doctor.  This theory only covers the higher functioning end of the autistic spectrum; Unlike many of my peers, I will not propose to understand something that I have no clue about.

My Theory!

In previous posts I have mentioned the iconic heroes from our past who are all linked with ASD in some way.

Imagine a world without Darwin and his off the wall theories…..He must have spent so much time, heavily focussed on his theories, determined to prove himself correct.  I can envisage him deep in his own world, toing and froing, wiggling his ideas until they were just right. At the time, to suggest that we are linked to primates must surely have caused a huge commotion. He was scared, he feared the world that did not understand him.  We do now!

Consider Einstein, he contributed so much to science and mathematics. Again, he must have been so brave, he even disproved and elaborated upon some of Newton’s theories at a time when even Newton’s theories seemed far stretched.  Einstein was considered crazy, people were unsure of him.  His own parents described him as ‘slow’ and he failed a test to get into a university when he was 17. We now know and understand that Einstein was a genius.

Temple Grandin, arguably the most famous autistic person in today’s world, uses her incredible intelligence and abilities to make the world a more humane place for animals. She also educates and inspires people to understand autism and to see the positive impact this ‘disorder’ can have on the world.

So, my theory is simple.  Maybe Autism, in its higher functioning form should no longer be seen as a negative, perhaps this is evolution and we are all playing witness to where humanity will eventually lead.  A world where things get done, efficiently and for the greater good of mankind. A world where people strive to understand workings and will always be aspiring to create a better model than the one before. Not a static society where stupidity and greed rule.

The great labelling debate…

Armed with a diagnosis of ASD (Autistic Spectrum Disorder), I felt empowered as a parent; I could finally make sense of my son’s challenging behaviours. I also welcomed the extra help and support that the diagnosis offered and Christopher was soon to be granted a 30 hour statement of education need – the magnitude of which is still overwhelming.

However, while I was rejoicing in the news that we had a diagnosis, there were some in our close circle who did not feel it was appropriate and who were, at times, quite vocal in their thoughts.

The term ‘labelling’ came up time and time again. Each time I heard the phrase “it doesn’t do children any good to be labelled” I envisaged a huge factory in which children are processed on conveyor belts, quality control machines applying lengths of tape to them, deciding their fate. It always felt that in such a system, the ASD label might be seen as an imperfection of some sort, like broken biscuits or misshapen chocolates. The image has never truly left me.

Obviously, I would stand my ground and try to explain the benefits of Christopher’s diagnosis and how it would not mean anything outside the context of his education; he would still be our Christopher and we would never change the way we treat him.

In reality, we did change – we all did. I became far more tolerant of the aggression and anxiety that goes hand in hand with autism. A trip to the supermarket would leave me exhausted and so often in tears as I abandoned my almost full trolley to just get home. This new ‘label’ gave me a sense of face that I had lacked before. I found new ways to engage him rather than expect him to simply follow me around on the mundane tasks. When people stared during the tantrums or suggested (as one lady once did) that I should discipline him, I was able to respond confidently with pride in my son and fortitude in my own management of the situation.

However, five years have passed since the diagnosis and the tantrums have practically stopped. The ‘label’ itself is now more important than ever in the school setting as Christopher is doing amazingly well. Disability labels are vital for a child to access the very best that our education system has to offer. Christopher is proof of this.

What does concern me is that the labels are so vague that they do not capture the strengths or limitations of the individual child and so ‘autism’ is all to often seen in a very negative light. Christopher has been singled out and ridiculed, but is this as a result of his label or as a result of his behaviour? With or without the label he is different. I am not so sure that being called autistic makes any difference to the wider worlds perception of behaviour that simply is autistic, with or without a label.

One challenge I have had as Christopher has matured is that he is now questioning the label. At the time of the diagnosis he was only five and conversation was mainly about fish. We never had any reason to discuss a mental health ‘disability’. However, at ten years old, and with a full-time special needs assistant, he is now understandably questioning everything! The saddest thing, and the one thing I would like to raise awareness about is that the labels attached to children with special educational needs (be it autism/dyslexia/ADHD) all focus very heavily on what that child *cannot* do, instead of highlighting the fantastic achievements and strengths that these children are often gifted with.

Consequently, I believe that labels are worth their weight in gold in order to allow children to access the education system and thrive in a world that they struggle to understand, and the world often struggles to understand them. However, I do wonder if Albert Einstein, Lewis Carroll, Charles Darwin and the many other iconic figures who are all considered to have been on the autistic spectrum would have suffered, if they had been sent to the big labelling factory as children?

A long long time ago, in a terraced far far away….(5 years ago/Bolton)

I can still remember the day I received the letter from The royal Bolton Hospital. I had waited and waited for this letter, firmly believing that this letter would herald the end of our turbulent times and we could move forward with the support we needed.  However, as I ripped open the brown envelope, secured with additional sellotape, my heart stopped for a split second and I hit the floor so hard I am amazed I didn’t snap my bottom bone! The wording at the end of the letter clearly stated “we can find no evidence that Christopher has an Autistic spectrum disorder” along with several other conditions he didn’t have. Not autistic? But? 

So, I am just a really bad parent.  This was the lowest moment of my life, as I sat on the cold kitchen floor I sobbed and wailed and pulled at my hair until clumps came out in my hands.  It has never been about the label, autism is just a word, but it was the one word that would help explain behaviours that my precious boy had shown for so long.  It was the word we all expected.

Looking back now, I wish I could have used my head and actually read the report, rather than jump straight to “In Conclusion”.  If I had read the report first I would have immediately noticed that this report did not reflect christopher’s assessment one iota!  I should explain that I was sat behind a mirrored screen while the ados tests took place so I saw everything. This report did not comment on how he answered the questions in a very literal way; How he become very easily annoyed with the questions and how at one stage he was upside down on the chair with his trousers falling off. No, this report, the one I had just spent hours crying over, seemed to suggest that Christopher had behaved in a very ‘normal’ way.  Confused and with a face so swollen from crying, I looked like I’d been punched, I drove to the hospital, determined to challenge the Doctor over her ridiculous report and bizarre conclusion. 

I arrived and was told the doctor was on holiday. Great! I was stood in the packed waiting room clutching the report and crying, again. The staff were as supportive as they could be but sent me on my way, making sypathetic noises about how they understand. Again, had I used my head I may have called ahead and saved myself this humiliation.

I did manage to speak with the Doctor about the report and she was as confused as I had been.  She did remember Christopher and his actions in the test room. I was told how the video of Christopher’s test would have been wiped as soon as the report had been written. Surely, they hadn’t watched a video of another child and written my son’s report on this ‘normal’ child? Yes, that was what may have happened but it was highly unlikely according to the Doctor. So the chances are that somewhere in Bolton there is a boy who has no autistic traits whose parents were mortified to find a diagnosis in their brown envelope. 

So the next step was to reasses Christopher, but this time he was to be observed for one day a week in the hospital. After the first week when I collected Christopher, eager to hear all about his adventure, I was told that there was no question, that the assessor felt confident that Christopher will receive a diagnosis along the autistic spectrum, a few more weeks should determine this with more accuracy.  And breathe….finally, it was like someone wrapping me up in the biggest bearhug and telling me that I hadn’t done anything wrong, and that my amazing little hurricaine would be able to get some proper stability and support.  

Sure enough, at the end of a 10 week programme of observation I was called in for an appointment with the doctor and the assessor.  I was handed another brown envelope, a bigger and bulkier one. As I opened the letter I blocked out the rambling apology of the Doctor for her previous conclusion. I did a quick pretend read for their benefit, hurrying to reach the ‘in conclusion’ section.  And there is was, a diagnosis of Autistic Spectrum Disorder.  Along with the letter came a few leaflets for parents about living with a child with ASD, a concept I found hilarious. I hadn’t just adopted a child with ASD, he was my boy, label or not, I knew how to live with him.  When I tuned back in to the Doctor I was told that her job was now done, she would pass the information on to the relevant agencies and we should hear something soon.  She then wished me luck and offered another apology for the time it had taken to reach this conclusion.

I think I skipped back to my car.  I was not a bad mum, Christopher wasn’t just naughty. Help would be on it’s way! 

In future blogs I plan to write about the role that ASD plays in our life now and maybe offer some help to other families struggling to find coping strategies.  I have many stories to share, some will make you cry but most, will make you giggle.