24 years old

 My son is now approaching his 24th birthday, he has come a long way.

He has completed his degree, something more to put on his CV. Sadly though he does not want to pursue a career in his subject (photography).

He would rather use the skills he learned as a hobby. Secretly I think the idea of looking for work in this industry is too daunting a task for him because the actual work would involve a lot of interaction with others,on a personal level, creating an intensity for him that could be almost unbearable. 

He had a negative  experience during his studies which may have tainted him. He had signed up for a agency offering work to students, giving them some experience while still studying,the pay was not great but it would give him some foresight of what to expect in the working world. His client was a social media 'person' and wanted some photos to promote herself and her website. She expected 'him' to tell her what to do and he expected 'her' to tell him what to do. Needless to say they fell out and he never looked for work with that agency again . The big challenge for an autistic person is of course communication, the embarrassment he felt during and probably after this interaction , was enough to make him nervous about repeating the experience, and I was not around to try to encourage him, nor did any of his tutors give him any words of encouragement as far as I understand it,when he relayed the story to me. He is very sensitive and worries about what people think of him. (like all of us) For him though this sensation is heightened,he can be troubled by negative interactions with other human beings for days months even years, and I can only conclude this is a result of his autism.

Perhaps his work will reach the wider public through other means.Perhaps the intense feelings will calm and he will feel like he can work in the photography industry in the future. 

Nonetheless he has gained some valuable experience from his time at university and he has truly become independent. 

I remember when he was 13 and we were in a record and DVD shop, he had brought all of his loose change ( this added up to several pounds) he proceeded to pay for a DVD slowly counting out all of his pennies and five pennies and ten pennies etc, without a hint of embarrassment, (the shop assistant was very patient) if only that quality had lasted into late teenage and young manhood. It all changed for him as he moved through puberty, the crushing embarrassment we all felt as teenagers seems to have stayed with him as he grows older . He would say he does not want to join the corporate world (whatever that means) but I think otherwise, secretly of course.

Masking (I missed that one)

 Like many parents of an autistic child I have read many things, relating to the subject . I have even read about the practice of masking, employed extensively by autistic people, but for some reason I never associated that with my son's behaviour.

Possibly because I was always looking for ways to support him and when he was in my company; well he didn't need to mask. The problem for him was when he was at school, he obviously felt he needed to mask there because of the cruel way teenagers can treat their peers, and given just how cruel they can be, even about the smallest of things ...........

There is a strong argument for providing education for these cruel teenagers about autism and about just being a nice person in the world.

If masking is successful in protecting an autistic person from ridicule and derision then obviously it will be their default setting, until they get to the safety of their own home. The emotional and to a certain extent physical effort needed for masking is I am certain hugely draining .

On reflection it is glaringly apparent that my son was putting on his mask every day he left home to go to school and subsequently to College, now thankfully that he is at university he does not feel the need to mask , in fact diversity is celebrated by him and his peers , he has also met and made friends with other autistic people and he has contacted a local charity, set up to support autistic adults. In addition he has been attending therapy sessions (all to the good ).

 I can't help thinking though that he would be in a much better place in his general happiness if our society could just catch up and get with the programme.

As far as I am concerned, well I can search my soul, all I want, to find the reason I did not recognise he was masking but it does not change the past. 

As to the future though, I hope to one day be able to talk to my son about his experiences at school and other dark times, I suppose parents never really forgive themselves , its just how it is , but I can at least recognise what happened so as to better understand my son in the future.

I mean, just having this light bulb moment has given me a better understanding of my son.

When I think about it

When I think about it , and believe me I do. A lot, probably too much . I think some one with autism does not know what it is like not to have autism, and vice versa someone without autism could not possibly know what it is like to have autism. 

That being said, leads me to no definitive conclusions , but it does help me understand why I don't always know where my son is coming from .

How his thought processes work are a mystery to me, just when I think I am getting a clearer understanding of how his mind works he goes in a different direction , which of course is his prerogative. Sadly though it is where our communication can break down, at this point I usually take a moment to try and settle the confusion in my mind , whilst understanding that the same thing might be happening to him. Since it is me that is trying to understand though, it often appears that he is in no way flustered or confused, he is just waiting for me to catch up.

Now there could be a lot going on in this dynamic; old person-young person; technophobe-tech genius, person who should get out more-person who gets out a lot, and so on.

My best guess, as to how his thought processes work, is to conjecture that he thinks like someone playing three dimensional chess ( see Star Trek ). He can park thoughts on one level, leave that subject and go to another level and carry on a conversation on a completely different subject, then return to the previous level and carry on that conversation without any break in his flow, as to how many levels ,and how many subjects, he can deal with,it is still, and will probably always, remain a mystery to me.

I grew up in a large family, often we would have meals together. Anything from 6 to 12 people would be sat around the table and many conversations would flow on many different subjects, so I have had some training in jumping from one subject to another,my son on the other hand is an only child so I can only conclude he was born with this ability,the fact that his ability to jump from subject to subject,confuses me sometimes, suggests to me,that there is some thing quite deep going on. Primarily because some of the things we are talking about ( at the same time ) are complicated , emotional , and by no means light topics.

If you know what I mean.

Thinking and Planning

             I am not sure how long my son had been thinking and planning,

But in late 2022 he announced that he wanted to go to university.

After leaving school at the beginning of the pandemic he went on to do a college course, he chose the subject whilst still at school,and before, there was any whisper or indication that the whole world and everyone in it, would be subject to a deadly virus, forcing us to live our lives in an extremely restricted way.

Said course was media and broadcasting focusing on working with cameras. He has always enjoyed making short films and is fascinated by films how they are made and so on. This particular course however focused on the theory more than the practical, and as the majority of his course was conducted at home sat at his computer he began to become demotivated. But not one to sit on his laurels he looked around for something else he could do.

He found a course in the north of England for a degree in photography. Which he duly applied for. All of this was done online from application to interview, he was successful and he started his course in September of 2023.

 But more worrying than this in the months leading up to this he seemed to be becoming more animated and excitable, it seems that for many years he had not been happy about being autistic and that for years he had been hiding it as best he could and as his new life was approaching, he was preparing to reinvent himself.

As if somehow this would exorcise the demons of the past, you might think that 'demons' is a strong word but after many conversations with him, I have begun to realise that he was facing some fierce bullying at school just for being different , ( maybe his good looks and his side ways look at the world annoyed the cool kids) I don't know.

Hence his reason to start a new life in another town, perfectly understandable you would say. 

The questions on my mind however were; Is he ready for this ? Is he prepared ? Have I taught him enough? Will he be able to hack it out there in the world.

Well he is half way through his course and passing his grades, making new friends, exploring religion of all things and to my mind he is safe because he is living in student halls and will be for the duration of his course and a little beyond, work and a career seem to be beckoning, as the university have lined him up with some photography work.At present he is surviving on a student loan and a top up from me.

The great thing about student halls is that all your costs are included so the residents only have to worry about one payment per month, quite different from the real world. 

And therein lies his next big challenge ( In my mind anyway ) Watch this space.

I would venture yesterday

So I guess the question on all our minds is ; Will my autistic child make it in the world ? How can we know? I would say some are more lucky than others some may continue to display autistic behaviour but not enough for it to interfere with day to day living, some may always need support of some kind ,but that might not necessarily  have to come from the parents.

Employers can support their autistic workers, for the benefits can be felt by both parties. Autistic people make great workers , diligent, attention to detail ,and follow instructions to the letter.

Some autistic people are supported by their partners. They prepare them for the working day, in such a way as to mask their autism, some are simply accepted by their colleagues.

But it is not always so straight forward 

At the moment in this country, it would seem like, there are no systems in place to facilitate autistic people into employment,by employers, that is to say employers recognise that autism exists, and that they have an obligation to employ people with autism , but when it comes right down to it. At time of interview 'human resources' are not properly prepared. 

There are Autistic Charities and government departments, set up to support people with autism to get into work. But it seems like they are not working well with employers because if they were more autistic people would be in work and more employers would know how to recognise an autistic applicant and how to interview and support them into working for their company.

My son; and I am sure many like him are very reluctant to reveal their autism diagnosis , although in an interview situation, after a few minutes the interviewer will start to observe behaviour not normally experienced in these kind of meetings. This is where the charities and government should come into play, be it seminars, video calls , legislation. Basically gently bombarding employers with all the information they need to improve the opportunities of our autistic population.

Given that autism is on the increase 1% of the worlds population, more than one in a hundred in the UK.

Something has to be done , I would venture yesterday.

If I was asked

If I was ever asked how I would organise support for learning in secondary schools, which by the way is very unlikely, even though I am a parent of an autistic child. I would do my very best to minimise the feelings of 'being different' that many or all young people with disabilities or learning difficulties feel.

It seems our educators have forgotten what it was like to be a teenager. The crushing embarrassment they feel when out in public , not all teenagers of course but many, and the teenagers with autism feel the clumsiness and awkwardness most keenly. So why then would you want to single them out by creating a so-called HUB.

On first analysis it seems like a good idea to set aside a place where the teenagers with learning difficulties can go, somewhere to relax and find a quiet place away from the hub bub of pupil life, but that by definition is not inclusion, that is segregation any child seen walking in or out of the HUB will immediately be singled out as different. And different is wrong, bad even in the minds of the less enlightened teenagers of our society.

The teenagers most likely to  bully are the ones who feel most insecure, for whatever reason,and there is nothing more empowering to an insecure person than the ability to bully some one so obviously more insecure than themselves.

That last statement does not take a rocket scientist to formulate, in fact it is psychology 101.

So why then would the educators of our precious children want to go out of their way to create a system that basically puts targets on the backs of our most vulnerable young people, at a time in their young lives were you could argue they are in fact at their most vulnerable.

If as I said, I was asked what I would do . I would integrate the hub and all its practises into the whole school structure. I would encourage the mixing of all of our young adults no matter what their individual challenges were. 

I remember seeing signs posted in my sons school ,saying, some people are gay get over it , or words to that effect. But I don't remember coming across a HUB for the gay teenagers in the school ,they were able to go about their lives with out that kind of exposure.

I really feel like my son and others like him should be able to go about their lives without that kind of exposure, who knows what the future brings.

Who needs to know

Even though it is now well over a year since my son left school, rather abruptly because of the coronavirus. He is still traumatised by the bullying he received there.

The victim of bullying will feel weak and insecure, and autistic victims of bullying will feel this 5 or 10 fold more. That being the case, what exactly were they doing at my son's school to address this?

Not much it would appear, even though there was a dedicated department to support learning, and support pupils with learning difficulties they seem to do little if anything to emotionally support the pupils under their watch. 

If inclusion is the goal of modern educators then they seem ill-prepared for the emotional support they should be giving to their charges granted they are on a learning curve but it has been over 15 years now that children like my son have been included in mainstream education.

I am now faced with the challenge of helping him heal from direct attacks on his character, which he feels are solely due to his autism, and convincing him to keep seeking support in all his endeavours because of his autism.

He, however, is convinced that no one should know, at worst new people he will meet will just think him a little odd and to him, that will be a preferred outcome as opposed to explaining he was born on the spectrum.

All well and good you might think, except if he does get employment where his autism is directly challenged he will have to reveal his condition. This might not go well for him if he has previously kept it a secret.

I am certain that in the future he will see that it is no embarrassment to be on the spectrum and that he can be as open about it as anyone with particular personal challenges, but as yet he has not reached this level of maturity. 

Since my last blog my son has started a college course, with my urging, he ticked the box in the application to say he had a learning difficulty after explaining to him that only his educators would know and that they had to know so they could best teach him he reluctantly agreed to tick the box.

Of course, any attempt by the support for learning department to contact him has been ignored.None the less they are aware, and that is a plus.

I also managed to get him a job with my employers, which he earned . He was interviewed they took into account his experience working in a charity shop but sadly without my intervention he might still be applying, attending interviews and ultimately being rejected. 

I am sure though I am not the first and by no means the last parent to help their child in to their first paid employment.

Brave and Proud

 Here we are now many years since this blog started, my son now age 19. He has become a handsome young man, brave and proud, aware of his autism but not allowing it to dictate his life. In fact, he would rather it was never mentioned again.

How that will transpire in his future remains to be seen, but it is a philosophy worth pursuing for now.

The only trouble with this however is that it is not always easy for him to mask the fact he has autism, I can only imagine how difficult it can be for him sometimes. 

He has recently been applying for jobs, and when he is filling in the application, he gets to the bit where they ask him. Would you describe yourself as having a disability? He answers no, he does not want it to be known, he accepts he has autism but he does not want it to be the main part of his character. 

He has managed to secure 5 interviews but is yet to be offered employment. Something at these interviews does not go well for him.

I think because of the stigma surrounding any kind of disability, he is trying to live like he is not autistic, which when all said and done is really quite sad. But when you think of how long it has taken society to accept same-sex relationships, it is not in any way surprising. 

If something about his autism was to influence him positively if in employment his autism was invaluable to his employer, of course, it would change his opinion. That day won't come until he actually gets a job.

 In an effort to make himself more employable I supported him in applying to a local charity shop, they were happy to take him on, he works for free but the difference it made to his demeanour and general well being was palpable.

We now have to apply that to paid employment it seems so close within a whisper of his grasp and as such to me is very frustrating because I know he is more than capable of working in any kind of role. He cant however communicate his competence effectively enough to an interviewee to secure that elusive job.

Watch this space.

Communication

How do you start to communicate with your autistic child, if on first diagnosis your child has no language or at least no verbal way of communicating? What can you do to try to coax your child into speech?

For many months my son spoke his own language which while very entertaining and fascinating to try to comprehend, was not helping him. His language was exclusive to him no other person on earth knew what he was saying the only way I understood, if he wanted something, was when he used sign language.

So I set about trying to encourage spoken words from him. I knew he could speak I had heard him say words, I knew he understood what I was saying because of how he reacted when I spoke to him.

At his daycare, they were using a method, whereby they would call him by his name several times a day then record his reaction. This proved successful as he went from not responding after 5 tries to responding right away like any other child would. I knew progress could be made.

It was very basically a case of giving my son choices, pick one of two things. So kit kat or penguin biscuit. The trick being, that he did not get his choice until he said or at least attempted to say the word required to secure said food item.

I had to be careful not to alert his suspicious side because I learnt early on he was certainly no fool. There was a little bit of a performance required on my part.

At first, he would just look more intently at the thing he wanted almost willing it out of my hand.

It occurred to me then, that I should not to put anything in his eye line and instead just say the word of the thing he wanted. That way he had a good reason to say the word.

I made it like a game and it proved effective. I always congratulated him and told him, 'good talking
son, that was excellent'.

Mine and many other peoples work supporting his language has proved very successful.
He is quite the chatterbox now and obviously enjoys a conversation. 

Children can be cruel

It has been some time since I have written about my son, mainly because he discovered what I was doing and asked me about it. I did not want to say it was a kind of therapy for me so I thought I better just stop especially now that he is in his teenage years. Puberty and autism are not always a good mix. I have a lot of pride and admiration for my son I know it is not easy for him.


When I think of my teenage years, and how excruciating they were, adding autism into the mix, well I can't even imagine what that must be like, and recently he has told me about some bullying he has been a victim of. He was telling me after the fact, something he does a lot, especially when it is something that has upset him greatly.


It is so true that children can be cruel, but I wonder if the children know just how cruel they can be? How much damage they are causing? Someone without autism would have trouble coping with bullying it is perhaps one of the most confusing actions, to make sense of, to a developing mind both cognitively and emotionally. When people who have been bullies, look back and remember what they did many of them are mortified by their behavior. Have little understanding of why they did it and in there later years would never contemplate taking this action again.


It comes from a place of inadequacy, of insecurity a place we all find ourselves in when we are feeling most vulnerable.

We need now in our enlightened and forward thinking society to put this abhorrent behavior into our distant past. We need to teach our young how damaging and far-reaching this behavior is towards our fellow human beings and how what you give out will eventually one day come back to you.

Exams

The first year of exams has arrived , and we are into the fourth month of preparation , I say , we , because I consider ourselves to be a team if you like . It has been a long road to get to this stage and I think for my son it feels like just the beginning .

When I think of all the support he has received over the years ,all the different people who have been so involved in his development , I feel somewhat humbled . I am truly amazed at his progress , from the day I was told of his diagnosis to today , he has gone above and beyond mine and many others expectations .

I hope he has had time to catch his breath , I hope that I am able to facilitate that .

Because this is the first year of many , and I don't mind admitting I am feeling the pressure , if as he hopes , he goes on to further education in college or university , it is conceivable that the next 5 or 6 years of his life will be focused around exams . A daunting prospect for any one , for a person with autism it will be a challenge indeed .

I like many other parents feel that the pressure put on children in their first year of exams ( and they are still children ) is too great , almost as if the schools have another agenda , like they have to fill quotas to secure funding . Which is unfair on the pupils .

Even more unfair on the children with autism , as I have mentioned before ' inclusion ' has only been in existence for 15 or so years in the schools in this country , and as such the systems in place are as I see it open for tweaking . Educators I feel should be mindful of the fact that , with autism emotions can be amplified and intensified , I would wager that the majority of 'High Functioning ' autistic pupils are for the most part like icebergs . when it comes to their attitude to exams , we only see 10% of what is actually going on .

But why do our children , autistic or otherwise , have to be put on the treadmill so soon . What is wrong with maybe inspiring the children to do well , rather than pressuring them to do well .The outcome is the same , and with the former I would think their enthusiasm for learning would last long into old age.

One size fits all

I am beginning to think that when it comes to secondary education , one size fits all . Which is not really my understanding of inclusion .

I was recently sent a text from my son's school saying ' your son is absent from school please confirm by text that he is not attending school today '.

Well my son left the house at the normal time to catch the bus to go to school . Naturally , if I am told, over an hour after he is due to be at school . That he is absent , I am going to be a little worried , given he is high functioning autistic.

When I receive texts while at work I can,t always read them immediately . The time that had elapsed since I had last seen my son that morning and reading the text was close to two hours .

I stopped what I was doing and called the school ,

I was told that he had probably arrived late and had not followed procedure ; ( signed a form at the school office , reporting his lateness ). The woman I spoke too , told me she would call me back as soon as she had located him .

I am usually calm in these situations , and can think rationally , but when my son leaves for school , that task becomes his life's work . Few other thoughts enter his head on the journey , he has a preferred seat on the bus , which is near to the bell on the bus so there will be no chance of him missing his stop . Obviously there are other pupils on the bus , but he does not rely on any one of them stopping the bus at the right stop.

I was called back within about 10 minutes and told that yes my son was at school he had arrived at 8.40 . School starts at 8.32 , he had missed registration and as there was a school assembly that day he he attended that and forgot to sign the lateness form . All was well again , a slow exhale .

I asked the woman at admin if it was possible that they could change the wording of the text , to late and not absent in these situations, and explained about my son's autism and how , when I receive these texts it  sends a shiver through me .

She replied that these texts were automatically sent with out any concern given to the individual child but she would pass on my comments .
One size fits all ...............................................

Support Group

It has been some time since we have been involved in a organised support group . In the past they have proved sometime helpful , sometimes not so much .

But this one organised by the great NHS has proved to be very successful . It has involved both my son and I attending . The parents sat in a different room from the teenagers , all boys in this case . and over 12 weeks we worked through the program .

 We covered very basic things . but as it turned out invaluable for an autistic young man .

The boys were given homework , a simple exercise ,they had to phone some one from the group and engage in a conversation for at least 5 minutes . They were given prompts for the call in the form of a sheet of diagrams . With things like a ball or a TV or a computer and so on . In order that if they were struggling for something to say they could reference the sheet of diagrams .

Each week they would review the homework . How it went , how long they talked ,what they talked about how did they end the conversation . Each boy had to phone someone or receive a call and they were paired with some one different every week .

Along side the phone calls they discussed such things as joining a conversation , leaving a conversation, knowing when you are not wanted in a group conversation , but most importantly they talked about having empathy for the people they were talking to . They were learning to understand the atmosphere if you like of a conversation , be it in a group or one to one .

This has proved invaluable to my son , and he has been applying what he has learnt to different scenarios as he encounters them .

What they talked about and learnt sounds so simple , and yet  when interacting with other human beings , my son was struggling .

It brought be back to all the other things he has learnt over the years and how , when they seemed so obvious to me to him they were like unlocking a deep and complex puzzle .

Talking in the car

Often my son and I talk when we are in the car . He always chooses the music , we have a vast collection of CDs in the car. I think that perhaps because we are not facing each other it makes it easier for him to talk . He is better able to talk about the things that make him tick , the things that he feels most deeply about , naturally over time he has become a fan of 80s music .

Now he tells me that he is happy to be autistic , he told me if he had a choice of being born with or with out autism , he would change nothing . To hear him say this fills me with great pride for his strength of character . He is obviously a great thinker and has been pondering his autistic status for some time now , he has recognised that the core of his being and personality are directly related to the fact he was born with autism .

He is an avid researcher and finds the internet a god send for some one like him , I don't know but I suspect he has been reading about Temple Grandin who is a great spokesperson for autistic people , as she is herself . In her own life she has had to overcome many difficulties .

At age 15 to say that he is happy with himself is a true achievement , given all the other obstacles to navigate in teenage . My hope is that he will start to recognise the advantages of autism , how it hones his clarity of thought , how it helps him to focus , how it helps when there are choices to be made and how much easier it seems for him , to find  what he wants or needs .

Unlike so many of his peers , he does not run with the crowd . he does his own thing . It would appear that he does not have to contend with the clumsy feelings of inadequacy which so often visit his teenage schoolmates  . It would seem that after watching the experiences of other teenagers , he feels at an advantage .  Not that autism desensitises , far from it , but it does allow for a clearer view on the world . He is probably the least confused teenager I have met .

I am aware though that it is still early days and the future is full of new challenges , not least if romance should ever come his way . For the moment though I will savour this time a true achievement .

Adapt the syllabus

                                If I was in charge of my sons education ? What would I do ?

The education system in this , or any other country , for that matter , is by no means perfect . And as far as educating  children on the autistic  spectrum who attend main stream school . Well I would venture it is still in its infancy . There is more to be learned about how autistic children learn . My son watches and listens intently at first before he actually does anything , which really confuses some teachers . but once he has assimilated what he feels is enough information , he takes part .

This , I don't think is the way all autistic children learn , but I am sure there are a lot who do. He has a photographic memory and is able to store information in his mind unlike the majority of the population . When he wants he can find the information , It was explained to me once that he learns in steps , first on a flat bit , then a steep climb , then on a flat bit again . The flat bit is the assimilating part , the climb is the learning . Which he does voraciously .

Would I have classrooms full of only autistic children  ? No
Would I have autistic children integrated ? Most definitely .
Would I single out those children . Separate their learning from non autistic children ? Not in secondary school .
Would I adapt the syllabus in order to teach the class as a whole . !00% yes .
Because that is real life . As I know you have heard many times , it takes all sorts to make a world ,

I don't actually know if my son's classes are adapted to accommodate his autism , I do know that he receives support . Which to a teenage boy ( or girl ) autistic or not , could prove to be embarrassing . I must ask more questions when I am invited to his educational meetings . But it seems to be coming clear to me now , that the teachers are on a learning curve as far as educating children on the spectrum,

I don't expect them to admit to that , why would they , it would come across as unprofessional . It can be frustrating though , as parents of autistic children are by the nature of their experiences , the experts. But so far to date we are not involved collectively in the structuring of the curriculum .  

I have attended forums , organised to improve the holiday playscheme's of autistic children but not forums on their education . Forums such as this , I think could  go a long way to help better educate our autistic teenagers .

Cross the Ts dot the I s

Just when you think everything is cruising along . All the t;s are crossed i;s dotted not even a thought to the p;s and q;s .

I have been looking for some time now for a club or group my son could join ,one that caters for teenagers on the spectrum . I have noticed in the past how he visibly relaxes when he knows he will be joining other children who face the same challenges as he does. He has a good friend who is also ASD (high functioning ) and they enjoy spending time together . Naturally they have an unspoken understanding of one another ,an understanding neither could share with some one of their own age, not on the spectrum .

For some reason the clubs for teenage autistic children start at age 15 , somebody made that decision it would seem without actually asking anybody who had an autistic 13 or 14 year old . Hard enough as it is to be autistic and a teenager , but to be lumped in with children younger than yourself . I am sure a person is going to start to feel like a spare part .

As it was I found a club that I thought he would like to join . So at the appropriate moment I suggested to my son that it might be a good idea or maybe even a great idea to join said club .

' Oh no ' came the reply . ' There is no way I am joining any club ' he said adamantly .
' I want to be seen as a normal boy I don't want to join some autistic club ' .

' Well ' I said ' First of all let me tell you there is no such thing as normal ' then after taking a deep breath and digesting what he had just told me .

I said . ' That is fine , no problem , if you don't want to then you certainly don't have to '.

For a moment I found myself longing for the days when he was younger when it was so much simpler , with none of the teenage angst to contend with . One thing was certain he had made it very clear to me how he was feeling at this stage of his development . I spent a little time trying to explain my understanding of what normal is and how in fact there really is no such thing , every living human has some quirk or slightly eccentric view of the world . If we could read the thoughts of our fellow passengers on the bus of a morning , we would I am sure be most surprised and perhaps a little overwhelmed by what we were discovering about the ''normal human condition ''.

My response to his reaction , was I felt clumsy , but I did my level best to take the opportunity to help him understand that basically . ' It takes all sorts to make a world ' as my Grandma used to say .

Guitar Lessons

Education in our society is a must ,without it we can not advance .It matters not in what form this education comes , be it theoretical , practical hands on, watching TV ,or perhaps looking out the window of the bus . The fact of the matter is we need it .

Schools of course provide a formal structure to education and ultimate advancement in life. In this country we can get it for free up to the age 18 , for which I am truly grateful . however providing free education does not mean the educators can not be brought to task . Most especially I feel when it comes to the education of children on the spectrum .

I , as a parent of a child with autism  don't see his autism as others do , I see it as something to be capitalised on , something that if truly recognised can in fact elevate my child above others . But of course I am a parent so it is only natural I would feel this way .

Since he first started to learn to write my son has had difficulty , at first it was thought he did not have the strength in his wrist and hand to properly hold a pen or pencil and for this he was given an attachment for  his pencil to improve his grip , I organised guitar lessons for him thinking I could achieve two goals , one to satisfy his musical curiosity and two to help strengthen his hands .

Both goals were met. Although his writing improved it has never reached a level that would be acceptable on an exam paper. Since around the age of 6 my son has used a mini computer called an 'alpha smart' at school ,( his typing skills are astonishing ). Just like we judge people on appearance , I fear his intelligence was being judged by the standard of his writing .

Sadly and much to my disappointment when it was time this term to attend the parents teachers evening , in which the parents were to discuss the choice of subjects for their children . I discovered that only in some of his subjects was he being encouraged to use the 'alpha smart 'and that the teachers of each subjects were not discussing my sons education .

The teachers using the  'alpha smart ' and getting the best results were not communicating this to the teachers who were allowing him to write free hand . He was most definitely having greater difficulties in the classes where he was writing free hand .

One of his teachers actually said to me ' I am beginning to be able to understand what he is writing ' as if that was an achievement , and if she was to be marking his exam papers that would be excellent .  It does not work that way in our school system.

 

I don't want the person marking my son's exam papers to be told he has autism. I am pretty sure that will not be the case . I know that my son most emphatically does not want the person marking his exam papers to know he has autism .

What I have recognised , is that in educating my son ,his teachers have to do it with a nod and a wink .

We know you have autism , we know, you know , we know . Now lets get down to the best possible way of educating you .

Pining for Primary

  Now that my son has been at secondary school for almost 2 years I am finding myself pining for the days he was at primary. Then the communication I had with the school was excellent .If I wanted to I could speak with his teacher every day ,if I had any concerns .There were less than 300 pupils and by primary 3 my son was well known and well supported within the school .

Now however things are very different . I can email his teachers even telephone his guidance teacher.I will always get a positive response, but it is not the same , he is one pupil amongst 1400 .
A very different dynamic , and as such I feel a little out of touch , much as I did when he first got his diagnosis at age 3 and 1/2 .

I am sure it is not the intention of the school to make me feel this way ,but sadly I do . I long gave up trying to understand autism or even think about the cause . I have instead decided to go along for the journey with my son at the helm , after all he is the one in the eye of the storm. Like any parent I will have advice and experience to pass on .My son is on a unique journey of his own ,the whys and wherefores whilst maybe somewhat enlightening, do not adequately deal with the here and nows .


And as every parent discovers over time ,good teachers are like diamonds ,and for my son , good teachers are the difference between him dipping his toe ,or him diving in ,to a subject . Good teachers are invaluable to all they teach . To some one who has in my view a higher hill to climb , good teachers are the connection he needs to the world where his disability is not in the majority .

Age 14

At age 14 now my son has begun to grapple with the fact he has autism .He does not describe himself as being autistic, but rather as having autism ,to me the distinction is important .It shows me, how he views himself, and his daily challenge with autism. To me it means that in his mind autism does not define him but rather it is something he is faced  with every day .

Recently I was teasing him about one day having a girlfriend and even one day making me a grandfather ,but he rebuked me and said that it would never happen .
Of course it will happen I said ,' any girl would be lucky to have such a sweet kind and caring person as a boyfriend .'
'But Dad 'he replied ' I have autism and that makes me different and a little bit strange , sometimes it becomes too much and I am overwhelmed and I need to calm down ,I don't think that is good boyfriend material .

While listening to his words part of me was jumping for joy ,finally after all these years he was now able to articulate to me how it felt to be him ,and another part of me was feeling very sad for him . I was also wondering how committed he was to abandoning all hope of ever being in a relation ship. Or was this in fact his way of hedging his bets .

I think the latter , and on reflection ,he is not really acting any different from other boys of his age.
I can take heart I feel from the fact that he is able to be so open ,about his autism ,at least with me that is .

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 .