I will never know

What does it mean to be autistic . I will never know , my son knows but has trouble explaining it , usually after an incident where his autism comes in to play , and he has regained his composure , he is better able to talk me through what has happened to him . Which for a parent of an autistic child is like manner from heaven or at least the angels intervening . For the first 13 years and more of his life I have only had intuition to go on and some calculated guess work .

Now that he is reaching an age were he can actually articulate to me what he is feeling it is like coming up for air after a long and deep dive , after holding my breath for longer than I thought possible for my inadequate lungs .

He says that he starts to think very quickly , which I suppose is akin to panicking but as I understand it his thoughts are still linear , only they are coming a lot faster than normal . So when plans have been changed and he only gets a few minutes notice he starts to think of the negative that could happen but not just one outcome but many . For example perhaps we have been planning a trip for several weeks and an outside force say a friend or relative from out of town decides to visit on that day meaning the plans have to be cancelled but we only find out the day before . He will start to rattle of a list of negative possibilities ,for missing the trip . It is partly my fault because I indulge his need for symmetry in life , but as all parents of autistic children know , to fight against such a powerful force  is a long and arduous battle one that is never truly won , and one that can be revisited .

In my case as a lone parent I have to take full responsibility for ruining plans that my son holds so dear . Where in the mechanism of his brain can I find the cogs that will turn his uncontrollable needs to controllable wants that can be put on hold if necessary ? I know not .

But I keep searching at least now at this age my son can begin to be my guide . At least now I have years of experience to look back on .Experience I feel is the key to him better dealing with the panic of the unexpected .

Play Scheme

Every summer for the past seven years my son has attended a play scheme organised by our local Autistic society .It is an opportunity for him to spend time with people who have similar challenges in  life  .They organise activities just like any other summer club the difference being that everyone who works for the play scheme has some formal training in working with children with autism . Many of the people working for play scheme are volunteers , they are there to learn and gain experience .

It is the time in his life when I feel he is at his most relaxed .Every day he is collected from our house by mini bus and taken to the play scheme facility . This year it is a new location for the children , and as such all parents were warned before hand and sent photographs .So as to properly prepare their children .

Although I know my son is very proud of the fact he attends main stream school , and he intends to study there until S 6 , he loves his time at play scheme . Primarily I think because he is with like minded people . Some of the children attending are not in mainstream education , because their life challenges are such that they need greater support.

I can only guess what goes through my son's mind regarding his experience at play scheme because he does not really talk about how he feels about attending , but what I do know is that he gains confidence and every morning he is keen to go .

It some ways you could say he has the best of both worlds .When I think back to my days at secondary school I remember that for the most part they were great times .Although my adolescents was at times crushingly hard to bear .With out warning I would loose my cool , usually in the company of girls, with no realisation of what was happening to me . Add autism to the mix and I do not know how I would have coped . Which leads me to believe that my son must , some how have a default setting , one that protects him from the natural disabilities brought on by puberty .


I only really know about my son I can not speak for other autistic teenagers .But given the difficulties faced by the average teenager , to some how be protected from deep embarrassment is a god send .
Embarrassment is not an emotion my son feels often and when he does it is for a short time then he moves on .Almost as if autism was designed this way .

He does not grasp the concept of cool and as such he is the coolest kid walking out of the school gates .

Autism management

As my son grows older and becomes better at managing his autism, I find myself when in company, having to bite my tongue some what . As time passes he is developing coping strategies of his own, without assistance he has begun to discipline himself in his day to day management of his autism .

He is now fully aware that he is not like everyone else . I have made every attempt to help him realise that this is not a bad thing but on the other hand he has something that is unique . Something I think , that is to be envied . Few children of age 13 could have such focus when pursuing their interests ,or be so dedicated to a task as to not leave the job in hand until it is well and truly finished and this applies to all aspects of life .

Although we don't always agree on what is the true definition of finished , when it comes to his food. There has to be something left on the plate , of about one or two mouthfuls . Why ? I have no idea . He knows why , and that is what is important and in the scheme of things this does no harm .

Since I learnt my son was on the spectrum (high functioning) I have been a keen observer of human behaviour . I have watched him interact with other children and adults and noted peoples reactions to him. Sometimes his speech is jilted , sometimes it is monotone and without emotion .What is fascinating to me at this time in his life is how like other teenagers he seems , because the firing hormones have a similar affect on many boys his age. The point I am trying to make is that you could meet my son for the first time and not think he was any different to other boys of his age , you would have to talk to him for some time before small signs of his autism would present .

And that is where I have to bite my tongue , when I am told ' he does not seem autistic at all '. But what they are not aware of is that the whole time he is interacting with other people . or out and about ,on a bus crossing a road , in a shop and so on . He is using all of his self taught skills to manage any given situation he is in . Sometimes it can be excruciating for him .

He knows what needs to be done and he knows how it should be done , but he has to manage the panic , block out the noises , focus his mind . He truly loves life and life's adventure , and he is not going to let a thing like autism get in his way .

My brave son .

Looking for love

Thirteen autistic and looking for love .Don't panic it is only natural we are all looking for love but it can be a little more difficult for those on the spectrum . I mean how do you explain to someone who is not on the spectrum , why sometimes you sound a little cold even when you are talking to your own parents .

You can only play the teenager card so many times. As we were all teenagers once ,we know that we behave a little differently with our parents than we do with our peers . I am finding that is not really the case with my son though , although he is now well into puberty it has not affected his attitude to me ,which is wonderful and very much a relief .

I was not sure how all the hormone activity would affect him ,naturally I was preparing for the worst scenario (tantrums and the like ).But so far it has only really ignited an interest in girls .His initial reaction to this new found hormonal activity in his body as far as attraction is concerned has been one of almost complete shyness and inactivity .He has been struggling with how to actually make contact with the object of his affections , much like any other lad of his age . He has no problem talking to girls , just the one he has a crush on . Which is fine by me ,he can take the next 2 to 3 years to woo her and I would not worry one bit .


I do feel though on a more serious note , that his biggest challenge now as a thirteen year old is to some how cope with the acute awareness he has of himself , with all the hormones bouncing around . And also cope with the fact he is autistic . I know all teenagers have moments of extreme embarrassment , seemingly out with their control. Mixed with the panic that can visit the mind of an autistic child it has to be approaching unbearable for him sometimes.

He seems to be coping thus far.

I often think when he goes of into the world of a morning facing the challenges each day brings , 'What a brave son I have' .You have heard of the saying ' fall of the horse , get back on the horse '.
It is something he is doing on a regular basis .

Cognitive

At thirteen now, my son's cognitive ability is increasing . Having spent now one full term at Secondary school , getting himself there on the bus on his own , and  spending some time at home on his own before I return from work ,  has led to him taking  a leap in maturity, also his ability to process  new things happening , has deepened .

His personnel understanding of his autism , though , continues to vex him .When ever he talks about autism he never refers to himself, or says my autism . He talks about it as a 'thing' or' autistic people do such and such ' .I know when he talks about autism , he is talking about himself but for some reason he is unable or not willing to talk of autism as something he has or is .

Which brings me to think is autism something you have, or something you are . I have noticed that when I am telling people about my son for the first time I tend to say he has autism not he is autistic , and yet I am of the opinion that autism is something you are . Autism does not define a persons character but it is a big chunk of it .It is a fact I can not get away from. Which then forces me to conclude that there can not be a cure for it .

If someone was able to take the autism from my son then he would be a completely different person. His perspective of the world would be turned on it's head .If however some kind of therapy or even organic medication (cannabis oil) was to be administered then perhaps he could live better with his autism, and even celebrate the fact that he is autistic .

Because he does have a very unique view of the world, and a character unlike any, I have come across in my life .Whatever it is he will do in life his autism will surely play a big part of that.

Secondary school

It is two weeks in to the new term at secondary school for my son and so far he is enjoying the experience .I will be visiting the school soon so I can get some feed back as to how he is settling in . Puberty and Autism ,I am slowly discovering are not a good mix . It is hard enough for your average teenager to communicate with out also being on the spectrum. For his whole life in times of frustration for my son I have adopted the 'hug tightly until it feels alright again ' method . And to date it has worked very well and teenager or not I will be continuing with this probably until I can hug him no more.

If an autistic child seems numb to their emotions then it would follow that some serious thawing out , is required. For me ,I just pour on extra love . Understanding what is going on in his mind when he is coping with difficult situations is near impossible I assume he is thinking on several levels trying to understand how to live in this world with autism and also trying to understand what it might feel like not to have autism which is a wish of his ,that he has articulated.

He came across a website with information on the benefits of cannabis oil  (illegal in the UK)How it had greatly improved the lives of children with seizures , and also shown to help children with autism. The facts about these benefits are becoming more and more widely known , so much so that the pressure on governments to do something about the legal status of cannabis is mounting daily .

What is significant to me , is the fact that he is actively searching for a cure or some kind of aid to help him with his autism . In just over a year he has gone from recognizing he has autism to trying to cure his autism. That tells me that he is finding life difficult and he would be happier  if he were more like the other children he shares his life with .

I have always celebrated his difference and never thought about a ' cure '. I have always been aware of  the fact that life is difficult for him but then I always thought he was coping well and accepting the challenges ahead . I see his cognitive skills deepening and with that he is becoming more understanding of what he is going through for me although it has been a long and hard road it has been fascinating to witness his progress , what has always seemed most obvious to me is that his autism , very much shapes his character to think that there is a cure is hard to think about , I think more research is needed .

The end of primary school

My son is  fast approaching the end of his time at primary school ,and it feels like I am along for the ride . I am sure it is the same for any parent when their first or only child moves from primary to secondary , the fact that my son has autism does present some different challenges . Having witnessed my son's reaction in situations that he is uncomfortable with , the reaction were he completely shuts down , does not talk or move even , were he feels his best course of action is to close all communication with any human even me,( at the worst of times). It is with some trepidation that I look forward to this transition .

It has been some years now since his last dramatic reaction as described above . But the memory of these reactions have  never left me. In many ways they have influenced my parenting because when he is afraid I am afraid and I do not feel it as keenly as he does .I think it is fair to say I am on high alert for any such reactions because coaxing him back to this world with minimum damage control is a delicate and very stressful challenge .

Obviously he is older now and more experienced he has learnt, by developing his own coping strategies , how to handle situations where he feels a (melt down ) approaching.

Children can and do hold their parents to ransom in certain situations, when it is a battle of wits for who gets their way , and I have always been wary of this wondering if my son's very dramatic reactions were in fact genuine . As the years pass and his reactions mellow it has become increasingly more difficult to ascertain if these melt downs are a result of his autism or him just wanting his own way . Generally  as a rule of thumb, if his behaviour seems unreasonable , like any parent of any child, I react accordingly, but in certain situations; for example , I have been left trying to explain to a very determined child , why it really is not so important that his music practice is done at the same time and for the same length of time every day and why on music lesson days practice can be done.

This type of conversation leads nowhere  .On certain things my son is immovable and when our exchanges of ideas and opinions is achieving little or nothing I bring these conversations to a halt.With the words ' we can both think about this and talk about it some more on another day'.

Giving us both an opportunity to regroup and hone our arguments, but what makes perfect sense to me seems completely off the chart to him . I have made a promise to my self not to play the autism card , as now he knows he has autism , I want him to reason things out without being told 'well that is your autism making you feel or think that'.