Cure , Yet to be found

I feel it is important to make some mention of the so called qualified people who insist that autism is something that can be cured, I am off the opinion,  it can no more be cured than being gay can be cured,  but that does not stop people trying to cure gay and autistic people. I really do not know, so I am only making a guess here, but when faced with a child on the autistic spectrum any parent is going to first do a lot of research then look at the not so conventional methods out there for the so called cure for autism which I should repeat does not exist.

I have come to this conclusion simply because in my opinion the fundamental effects of autism on any child or adult is emotional, that is to say emotions are felt more keenly by people on the spectrum. How do you cure emotions? Not all autistic children are the same as their heightened senses affect them in different ways, granted there are many similarities, but one child might hate to eat chicken while another will only eat chicken. My son on first meeting him can be very sociable but if physical affection comes into play he can be very stilted and awkward, some autistic children give the most amazing hugs and so on.


What worries me and also makes me a little angry are the people who profit from all of the confusion, the people who profess to have had made noticeable progress with autistic children,  when the child was going to progress anyway. The people who charge exorbitant fees for so called cures that have no scientific basis and are just pure conjecture.  

What I am trying to say is autism is not tangible, you can find no evidence of it, it is not the colour black, a heart doesn't beat faster or slower,  they say there is an anomaly in the brain, but only after using the most sophisticated M.R.I. scan can this be detected and it is more to do with firing neurons than a defect or mutation.So is that the firing neurons of an autistic child, or does an autistic child fire these kind of neurons, or did the autism develop very early in pregnancy and these firing neurons only confirm what has already been diagnosed. Or is the only difference that the child has heightened senses,  that when exposed to our modern world ,the child cannot cope, so it implodes.


You tell me. Trouble is you can't. Because you don't know.

The Diagnosis

When I first received the diagnosis for my son my biggest and most overwhelming fear was that he would not progress, that he would stay the same.From age two' to the time of the diagnosis at age three and six months' he had barely learnt anything, or so it seemed to me. Although we could play and have great fun together it seemed like he was not learning. He was eating and growing but his intellect did not seem to grow. At his preschool they were trying some techniques to help his cognitive skills progress,  but it seemed like very slow progress,  and if he did not attend for a few days, he appeared to have forgotten everything.

I am a little ashamed to admit it but of all things,  if he did not progress it would have been the hardest thing for me to come to terms with. I love my son and no matter what it is unconditional. I would do whatever to make his life a happy one but if he had stayed more or less the same I would have found that very challenging.    As it was though that did not happen and he has made progress consistently since the diagnosis. I most definitely think that without all the help and support he has been given, he would have taken a lot longer to get to where he is now and none of this would have happened without the diagnosis.

In my minds eye I liken my sons path to independence like that of a child learning to ride a bike. I am running behind him holding the saddle waiting for the right time to let go so he can cycle on his own. The only thing is I have been running for a long time and there are others running along side me. We are all cheering my son on  almost willing him to cycle on his own.

I am sure I am not alone, with what I thought originally,  and I am sure there are many parents who like me still grapple with a small amount of guilt. But when all said and done we all of us just want the best for our children, and when faced with having a child who not only has to overcome the day to day challenges of living but also has to learn a whole set of coping skills whilst trying to keep up with their peers, it can be no surprise that hoping and praying for any kind of progress would be a natural thing.

Now I am very confidant my son will achieve independence.

Sleep

Every night to settle my son into sleep we have a ritual,  that took perhaps two or three months to perfect, it is essential we follow this ritual otherwise he would find it very difficult to fall asleep.It started when one night he was having trouble sleeping so I told him, "why not dream about something that makes you happy"."Like what Dad "was his reply. So from that day I have to come up with a dream he can have and woe betide me if I repeat a dream. There then follows a whole speech I have to do, as follows:

You could dream about being a detective, you could dream about you and me , packing a suitcase, going to St Johns road , to catch a Taxi to the airport to get on a plane to go to Hollywood. You could dream about eating an Eiffel tower made out of french fries, or perhaps eating a Buckingham palace made out of chocolate, or perhaps even a Edinburgh castle made out of chocolate. You could dream about taking a trip to Disney land Paris , or Disney Land Florida ,or perhaps even Disney land California.You could dream about jumping off the moon on to your bed, you could dream about mummification, you could dream about making an advert. You could dream about eating an Empire State Building made out of oat cakes. Finally you could dream about taking a trip on an Ocean Liner that has three restaurants, two swimming pools , two cinemas, a theatre, a dance studio, a performing stage, a nail bar, a hairdressers, a Costas and a McDonalds.

I have recited this every night for about six years he never tires of it, some of it he suggested himself. Needless to say more often than not he falls into a deep untroubled sleep and I am so used to this routine that I fear I might have trouble sleeping if I did not complete it myself.

Off course when I share this with other parents they find it a little odd, certainly now he is in his twelfth year, but as far as I am concerned whatever it takes, for him and in turn me, to have a good nights sleep then it is worth the repetition. My only puzzlement is when will he decide that he no longer needs me to go through this routine? When is he going to start behaving like a young teenager, guarded of his space and time?  Bearing in mind that in six years he has missed this routine five times and each of these times I was not present. I ask the question, not expecting an answer like many things attached to my sons development, I know at the end ,the answer is not always what I expect.

Six years a lone parent

As my six year anniversary approaches of  lone parenthood it occurs to me that I have become desensitized somewhat to my sons autism . What might seem a little odd to on lookers to me has become the norm, one of the perks if you like is that my son is not encumbered by the usual embarrassment most other children of his age possess. He happily walks along a street with me, his arm in my arm with not a thought to how it might look to others, even children he might know.

I have often thought to myself, how important a society is with diversity of character, how we should celebrate our differences and not feel we should always follow the crowd. as my son grows older it seems less and less likely that he will be one who follows. Although it is apparent to me that he curbs some of his more eccentric thoughts and actions when among his peers from his main stream school. When he is among other children on the autistic spectrum he fairly flies. In term time once a week he attends a club that was set up specifically for children on the spectrum. It is one of the most favorite times of his week. It lifts my heart to see the excitement on his face as he approaches the doors of the club and to witness the welcome he receives from the other children. Similarly he attends a play scheme for two weeks in the summer organised again for children on the spectrum this is possibly the happiest I see him,(except when he plays with his favorite cousin).

I know however that he has grappled with the fact that he has autism, perhaps not immediately on discovering this fact, which I am estimating happened about when he was aged nine, but certainly in recent months as he is now in his twelfth year of life. With quiet observation I have seen how he becomes a toned down version of himself when he is with the children from his school. I can see the challenge he faces on a daily basis to not cause alarm amongst his friends when he gets his uncontrollable urges to be 'autistic'. which to me is more about him celebrating life and all its wonders, than trying to impress or seem cool or different.

I know his friends at school also quietly envy him at times because of his lack of embarrassment, and how at times he will say or do what ever it is he is feeling at any given time. I also know these same friends will be with him as he grows older and moves to secondary school and that he will share with them the trials of puberty. Beyond that I have no idea what to expect. I am a little excited, a little nervous, and a little afraid.

Day to day living

It is fairly regular these days that I will read a story in a newspaper or see an item on television that features autism. I generally find once I get to the end of the article or TV item, that I am no wiser from when I started. Unless you have a genuine interest in autism then I don't think there is any need to report about it. Documentaries show autistic children and adults to be different, or to use their favourite word 'special' they never show autistic children or adults just going about their business. How about we see them doing all the positive things, working with helpers , carers, and educators. What main stream has not yet cottoned on to is that autism is on the rise and it is here to stay. Autistic behaviour is not something,  to be wiped out like polio, or given an immunisation like measles. It is part of our evolution.(not wishing to sound like a mad scientist).

An average primary school of about 300 pupils may have one or two autistic children attending now in 2013 but I would make a serious bet that in years to come that number will only increase. Granted the process of diagnosing has radically improved and children are being placed on the spectrum who a few years ago would be just thought of as a little slow,  but that still does not detract from the fact that the number of children being born with autism is on the increase. Here in the U.K the estimate is one in every 100 and now in the U.S.A.  recent estimates have suggested that it is as many as one in every 88 children born.

Since no one really knows what causes autism, I have taken it upon my self to ask any body who has contact with autistic people on a regular basis, what they think causes it. I have asked Doctors, teachers, (primary and secondary), pediatricians, psychologists, and other parents like myself. Some say "no one knows" others say "there is an anomaly in the brain" which is fine but what causes that. The best answer and one that makes most sense is "there is too much stimuli out there, it is all around us all the time, for approximately nine months baby goes were mum goes hears what mum hears watches what mum watches" Not for nothing do they tell us playing Mozart to our unborn children improves their intelligence.So unless we can learn to live in near silence again,  with the only media shouting at us is the paper seller on the corner, I think we are going to have to get used to welcoming more and more autistic children into the world.

Off course I am but a humble parent of an autistic boy now 11 years old, I have spent those years looking after him and not at University studying Autism. So anything I have to say is purely gleaned from experience.It is a layman's perspective if you will.

Not enabling

As I have said before, at home it is just my son and I which I think makes life a lot easier, but at the same time I think I have to be careful I am not 'enabling' him. I feel it is important to challenge him and his autistic behaviour, to take him out of his comfort zones from time to time. For years I have been letting him leave his bricks, neatly arranged on the sitting room floor, over night. Initially because if I attempted to move them just before bedtime he would have a serious melt down, as if moving them was threatening to life itself. If I tried to tidy them away in the night while he was sleeping, my actions were met with the same response in the morning. Making our morning routine before school a little more complicated than usual. I was also the recipient of  some harsh words and deathly stares. We share a home,  and I would much rather a clutter free sitting room floor,  but as I was the only one effected I would let it pass.

But this habit could not continue,  I wanted him to learn that life is full of compromise and what he does effects others, I wanted him to learn empathy. An emotion that comes naturally to most of us, but to a child with autism this is a different matter. His often times blinkered view of his own world, only serves to exclude others, understanding this is one thing but feeling it is quite another.

My first tactic was to feign falling over the bricks and then complaining about them being on the floor, and before he had time to do anything I would start to tidy them away. I had a about a three minute window before  the complaining started at which point I would engage my son in a conversation, trying to reason with him,  off course having been left alone with his bricks for so long,  to get him to my way of thinking I was facing a high hill to climb. Another thing I tried which worked a lot better was, I would tell him there was to be a flat inspection and the floor had to be clear. On announcing this he was very compliant, he most definitely   responds to orders from unseen authority.

In the end we compromised and after much discussion it was decided that if any of the bricks were loose, not part of a structure then they should be tidied away, and if any bricks were joined and forming some kind of object no matter how obscure they could stay. This was achieved over about two years not forgetting he is maturing all the time.

Time with mum

Not until I knew his mother was two thousand miles away did I start to realise just how jittery I had become.  I felt like I had done so much work with my son,  and he had progressed so much,  that I did not want her to  interfere but she is his mother. Her time in Scotland was for me,  a bit of a white knuckle ride. Funny how you realise things after the fact, probably better that way.

We heard nothing from her for about four weeks, then I received a phone call. She spoke as if we had just spoken the day before and asked casually to speak to our son. In hindsight, the four week gap in communication gave my son time to get used to the idea she was gone, before she left she had said to him that she would return. But in that first phone call she explained to him that she was not returning to Scotland.

As a parent of an autistic child you find yourself preparing your child for up coming events, explaining how any given day is going to unfold. Answering all questions about what will be taking place with as much clarity as is possible. You do this because if you don't your child can become very distressed. If for some reason plans are changed at short notice, well you better put aside one or two hours of your day,  while you explain why plans have changed and what instead is happening. On days when this has happened to me, I have tried to just bite the bullet and go ahead with the new plans with out any explanation, in doing so I have ruined the day and rued the day I tried it. But onward and upwards.

So on hearing the news that his mother was not in fact returning I steeled myself for a long day of explanations and comforting my son. However his response was numbness, which I think was far more upsetting for me to witness than what I was expecting. When he responds in this way it is the last straw, if you like,  there is no where else for his emotions to go, and no amount of coaxing from me could get him to talk about his feelings. I suspect because he felt like,  if he did talk about it he would not be able to control himself. Better to be silent and still or 'shut down' to use a very  descriptive phrase.

Over time he got back to his usual happy self, I look forward to the day, although it may never arrive, when we can talk about this time in his life.