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'.

Reading about autism

Every time I read something about autism ,about a professional who has worked with autistic children and adults for years and years. I can not but help conclude that they know very little about what it is they have been studying for all those years. I read what they have to say with keen interest , in the hope that I will glean some  piece of information that will give me a better insight into what is happening in my son's mind. But find myself only a little bit wiser .Although there are exceptions .

In my experience , the people who have the deepest understanding  of autism and what is going on in the autistic mind are the people who spend real time with them . Helping with  eating or dressing or bathing and so on . Just the basic day to day things that need to be done , day to day. They might not have degrees and they might not be able to articulate as well as a Dr or Professor but their understanding of the children and adults in their care is far in advance (I feel ) of the so called professionals .

Data gathered over many years tells only a small part of the story , I am sure . Never have I heard a professional talk about the emotional side of things and to me the emotions are everything , the emotions are what drives the behaviour. Off course it is understood that a calm environment creates a better atmosphere for any one with autism, there is evidence that the autistic brain is wired differently ,with all the research that has been done it is possible to predict the behaviour of an autistic child or adult .There are tried and tested methods of helping autistic people have a better cognitive grasp on the world and the people in it. But no one can tell us where is comes from  or why it is here,( not definitively anyway )

My only real qualification is my experience. And with that I can deduce only that our world of today is full of stimuli to the point of over saturation and perhaps unbeknownst to us a growing child in the womb of it's mother is picking up all of what is going on outside it's safe temporary home. Only for this to continue after birth (relentlessly). As to why it manifests itself after 18 months of the child's life, must have something to do with just growing . But there is no PHD after my name.

Soon be 12

My son now is very aware of his autism, he started to ask me about it a couple of months before his 12th birthday, many adults with high functioning autism say they would not have it any other way . But not so my son. On more than one occasion he has either written or said he would like to find the cure for autism . If any one does, there is no reason why it should not be him . He is after all in the eye of the storm .

All through his young life I have looked forward to the day when I can ask him about what it is that goes on in his mind , why he chooses to do the things he does why he can't eat certain foods ,why he does not seem to have any sense of urgency about one thing (getting dressed for school) but gets extremely excited about another ,( bringing the correct P.E. kit to school ).

' Dad ! Dad ! you forgot my P. E. clothes , you MUST get them and bring them to the school'
'As you wish my son '

Although he is voicing some of his feelings and concerns about his autism, to date he has not been able or perhaps willing to explain to me what is going through his mind .He does however lament the fact he is not the best at anything among his peers. I feel he is being a little hard on himself , but this feeling of his does give me an indication that it is not always easy being him.

There is no doubt in my mind that he has the keenest of intellect and he can think himself out of difficult situations, brought on by his autism . A simple example would be making eye contact with new people he meets , it is obvious to me when I watch him in these situations , that he is working very hard to overcome this difficulty. Another good example is when he feels a panic coming on, in a situation where his immediate future is uncertain . He can talk himself to a calm place, and this is not something that has happened over night he did not wake up one morning with this amazing ability, this is something he has learnt. In my opinion that indicates a very keen mind indeed.