Will there be a cure

  So much has been said about autism, but still really little is know about where it comes from and why it is here.We understand how to treat it and how to get great results from all children on the spectrum but we are still not certain what causes it and if we do discover what causes it will we then be able to cure it ? I think not  because to me I feel it is so deep routed in the psyche of the autistic person that it is in fact part of their character just like being artistic or musical or whatever.In my experience it is not just black and white, all  autistic children are different . Agreed they follow some similar behaviour patterns, but when you get down to it they all have their very own characteristics .I have yet to meet an autistic child with a nasty bone in their body though.

When I think of my son , I am sure he is blessed, I have heard from other parents of autistic children , they tell me their child is ridiculed at school and many have moved their child to a special school where they have in fact flourished . Sadly though this is not the ideal , because ultimately the child will eventually have to leave that school and live in the world. But none of that has come my son's way. True I did give the evil eye to a few of his class mates from time to time if I thought they were giving my son a hard time, I don't know how far that went to protect him from cruel jibes .I know that he himself tried to work it out with some of his less friendly classmates , by facing them and asking them what their problem was. Very courages on his part, but he does not see it that way , to him he had to get to the bottom of why he was being treated in a negative way. Now it seems he is almost the class mascot his class mates have embraced his differences and now even protect him if necessary.

All of this takes a weight of my shoulders, because as he moves into his final year of primary  I can bask in the knowledge he will be attending main stream secondary school .

First year in Scotland

In my son's first year at his Scottish school and his first Christmas in his new life, he was about to become involved in the School Christmas assembly, to which the parents of P1 and P2 are invited. Several weeks prior to this event the teachers had been preparing the children as there was a song and some acting involved  and most of the children had lines to learn. Up until about two days before the assembly my sons teacher was committed to have him be involved, but at the final rehearsal she felt that he was just not ready, he was not focusing and although he knew his lines he was not delivering them with any consistency. So it was with great reluctance she made the decision to exclude him .Instead he was to sit with his learning assistant and she would guide him through the proceedings. He did get to dress up though, new white shirt and a very colorful bow tie.

While watching the assembly I could see he was very excited,  and that his teacher had made the right decision. Although at the time it saddened me I still drew comfort and warmth from watching him obviously enjoying himself and also I could see very clearly how well he was being looked after.

Every year at assembly his role has grown and gradually over time he has been given more and more to do. Until his last performance, where he performed a magic trick  and sang a song (Where did you get that hat ?) With great aplomb. He is now capable of doing this because of all the hard work and effort put in by all the people who have been with him every step of the way. For about three years now he has been attending a drama club, where when I first asked how they felt about having an autistic boy in their class they replied "not a problem".

Once a week he has guitar lessons and again his teachers (A husband and wife team) have no problem in teaching a boy on the spectrum. Some of the people he encounters in his life have an understanding of his autism and some just go with the flow,  the fact is his character is celebrated not suppressed,  his light is allowed to shine at every opportunity.  Only on a few occasions has he encountered fear at his obvious difference from others. Fear and ignorance. For the most part though he has faced very little prejudice and although I think that some of that has to do with the fact he looks like most other children, in fact he is really quite handsome , I feel I can still celebrate the society I live in, for it's forward thinking.

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.