Teenagers and Children with Asperger's Syndrome Update by Anna Van Der Post

LILLY

James was 15 when the book was published and he was in a pretty bad way. He was obsessed with civil liberties and would not leave the house unless he wore a full-face balaclava. He was malnourished and unhealthy after years of eating an eccentric diet which consisted of a number of self-imposed rules which meant that he ate no dairy products and few vegetables. James had not washed in years and lived in the same filthy shorts even in mid-winter. His sensory problems had peaked and he couldn't tolerate noise, the feel of most fabrics or normal household smells, so he spent all winter with his bedroom window open, dressed in just a t-shirt and shorts. His underlying mood was bad and he refused to share any aspects of his life with his family. In short, life was pretty dire and it was hard to see a way out, or to believe that life would ever feel worth living again.

What a difference a few years can make. The effects of maturation cannot be underestimated. James suddenly, almost overnight, changed. He had not been subjected to any external interventions or pressures to change but something within him switched and he turned into a more reasonable, less extreme version of himself. James is now a thoroughly decent, very likeable young man and is for the most part, a pleasure to have around. I don't mean that he sits around having light hearted chats or seeks out our or anyone else's company, but that he tolerates and responds to short conversations and is no longer perpetually irritable and angry. During his teens he rather painfully appeared to hate me and now, almost affectionately sees me as a bit bonkers and as an alternative, I‘m quite happy with this!

He now has realistic plans for his future which no longer entail running away to avoid ID cards and state surveillance. He is planning to take an Open university degree and then, at some later point, to read mathematics at a redbrick university. He is choosing a pathway where he is part of the world, albeit on his terms, in his own way. Finding a place in life where he can be himself has always been my dream for him. I do not want him, as so many others are, pressured to live a life, pretending to be something other than he is and consequently feeling perpetually stressed. What I have always wanted for my son is for him to be allowed to be himself, to be happy with who he is and for others to accept that. For the first time in years I really do believe that this is not just a pipe dream but a reality, within his grasp.

KITTY

My son is now 17. We have been very lucky in that the special school he was attending opened a post-16 facility which allowed him to continue his education. We were worried that he would be offered a course at a college without the expertise and support that he needs. As with so many people with Asperger's, he falls through the net because he has a measurable IQ well above the norm and therefore his disability is not a "learning difficulty" that would entitle him to more support. Of course, in a mainstream college with all the noise and confusion and just the sheer number of people, we know that he would not be able to function, or think clearly and that his frustration and anxiety would, unmanaged, lead to an outburst of violent behaviour. Not if, when.

However, he is continuing to thrive in his protected school environment, with only 36 pupils in the school, and is sitting some GCSEs - which we would not have imagined possible a few years ago. He is sitting foundation level qualifications - which do not reflect his intellectual abilities - but the questions are phrased reasonably unambiguously in most subjects and he has been practising hard to try to learn to recognise what the question is likely to be asking. In the end, it simply depends on whether he is feeling co-operative on the day of the exam or not.

At home we are having to deal with normal teenage angst+. He is aware now that the life he is leading is very different from the life of other teenagers - especially in terms of social relationships. This made him very sad for a while. Many times he expressed feelings of loneliness and inadequacy. But the fact that he was expressing them made me hopeful. We discussed strategies for socialising - and he decided to try to construct a social group around his favourite genre of music (well, he calls it music). Through the internet he found a couple of other lads around the same age, in roughly the same area, and arranged to meet them (with discrete adult support). He located a possible venue to meet in. I helped with the admin, bookings, payments, helping to draft e-mails but the driving force was his desire to be more sociable. The internet seems to provide a useful "filter" for communication that allows him to socialise on his own terms and in his own time - no confusing body language, or overload of information, or subtlety.

He still needs a lot of support for everyday functioning. He is unable to organise his own routine and still needs support to get up, wash and dress. He becomes extremely anxious during attempts to show him how to cook - he is terrified that a boiling pan could overflow and put out the gas and lead to an explosion or that burning food could cause a fire - the consequence of which is that, although he is theoretically interested in learning how to cook, as soon as the food actually begins to cook, he becomes distressed and turns it off. When crossing the road, he still only feels safe if there are no moving vehicles at all in sight. As we live in a large town this means that, effectively, he could be stranded for hours without someone to guide him across. Accessing public transport, which would expand his horizons immensely, is an area we are working on at the moment. He is too anxious to buy a ticket in case the driver asks him questions and is particularly anxious if a group of young people, particularly boys, gets on the bus and says that he would, if on his own, avoid the problem by just getting off the bus or train. He is anxious that he will be targeted if they recognise that there is something different about him. This pattern re-enforces what I have always thought, that it was never a case of unwillingness on his part to comply with social norms, as so many teachers and other experts insisted. He would dearly love to blend in and take part in activities - he just can't get it right.

At the moment, then, my son probably has more in common with his peers than ever before. As he moves into adulthood, I wonder if, as so many people say, he will begin to stand out less in a crowd, that he will learn to function within his boundaries in a meaningful and satisfying way. Sometimes I feel that he is making progress towards independence and then some minor deviation from routine, or some slightly stressful situation, will throw everything into chaos and we realise just how much he still needs our support.

Taxis to and from school continue to be a source of disruption, confusion and upset for him - but recently, after I don't know how many years of complaints and phone calls, someone from the Local Authority actually came to see us and to check out the facts for herself. This followed a very irate call from us a few days earlier, when the taxi company decided, on the day my son was to sit his Maths GCSE, to turn up quarter of an hour late - they arrived eventually only to inform us that they would not be taking him straight to school but were going to a nearby village to pick up another child and take them to school first (even though my son is supposed to be the sole passenger according to his statement).

When the woman from the council came to see for herself I was astounded. The coded message we had previously received from the transport manager was that we were so far down the food chain that nobody could care less whether my son got to school or not, the taxi company would still get paid as would the local authority transport manager. However, having been told that my son actually needed to be at school to take his exams by Pupil Support Services, the taxi company had apologised for the "one off" (is there such a thing as a "many off", I wonder?). And two days later, the lady from council arrived at my house at quarter to nine (he is supposed to be picked up at half past eight) to ask if everything was now in order. The taxi had not yet turned up at all - only sending a car at all after she rang them to ask what was happening. This, again, on a GCSE exam day and they finally turned up to take him to school at twenty past nine. The only good thing was that the lady from the council was sat outside in her car, watching them.

Why is there a different set of rules for children with special needs? Yes, a stupid question, I know. Because they can. In my professional life, I am expected to work to professional standards, I am audited and assessed and expected to take responsibility for my own performance. I am not given carte blanche to behave shoddily and unprofessionally as long as my clients have a disability of some sort. Whatever happens in my son's life next, I am sure I shall be ranting about discrimination in the provision of public services for many, many years to come.

MARTHA

Martha (in the US) has three sons, two of whom have Aspergers. In the book we witness how Martha spent the best part of her children's school years fighting the education system trying to ensure that her children benefited from a free, public and inclusive education system. She fought for them to receive appropriate and adequate support and for staff and pupils alike to be educated about their needs, so that they could realise their full potential. After years of endless and at times fruitless battles, meetings and problems, she eventually decided that her only option was to sue the education board. Finally, her efforts were rewarded and the state agreed to fund places in a small, totally inclusive private facility. At last her children were happy and progressing having endured years of institutional neglect and what had all the appearance of cynical, state, game playing. Martha's story ended when her eldest son, Luke, was about to start a community college. Her middle, neuro-typical son, Simon, was, as he had always done, calmly living his life and giving his best at school and at home. The youngest boy, Daniel was finally settled in his private school and was slowly learning to relax after 8 years of inappropriate schooling.

Martha's boys are all progressing phenomenally well. Her continued and dogged persistence enabled her son's to attend the right school for them and they have blossomed.

Martha's update in her own words is as follows. Luke is now aged 20, and has completed 2 years in the college Transitional Skills Program. This last semester (since Christmas) he has had a job in the mail department on campus. He sorts, writes delivery slips, and then delivers and gets signatures of receipt one day a week for four hours and he absolutely loves it! It is more of an internship - which means it doesn't pay, but it will look good on a resume. He also has passed some basic computing classes including windows and word. He will not be returning to the class in the fall and we are working to find the right job coach to get him a paying job. He has really blossomed socially - his social calendar is generally much fuller than the rest of the family's!

Of her middle son she reports. Simon is 16 now and driving (that's been a tremendous help)! He will graduate from high school next spring and hopefully go on to college on a basketball scholarship. He was invited to the state tournament for USA Junior Nationals (a big deal for our small private school) and now he has been invited to the national tournament in Columbus, Ohio, in late July this summer, where we hope a college coach will be very impressed and want him to come play at that college! And to his credit, he isn't really picky, he just wants to play college ball. Even though he is only 16 and was still a junior in high school, he took a college course this past semester and got a solid B - Intro to Psychology. And he's applying for jobs at daycares - he has turned into quite a young man and I am so very proud of him. He will continue his college classes this fall and into the next spring so he should have quite a few college credits by the time he graduates from high school!

Daniel, her youngest, she reports, is truly the remarkable story in the family. He is going into 10th grade and has turned into quite the leader in his class. He is still quite the brain, and most definitely still has AS, but has learned some wonderful coping strategies at the private school. He is aware and almost proud that his AS makes him unique! He is also a basketball player, and while he has the potential to get a college scholarship also, I don't think he has the same drive that his brother does. He would rather have an academic scholarship - it doesn't require as much running! Seeing him grow into a thoughtful (most of the time) young man brings tears to my eyes and just melts my heart.

On a personal level Martha is happier as she is no longer having to fight the education system, or deal with her son's bad behaviour which resulted from the inappropriate schooling. She now has a future and has begun to take back a little of her life for herself, working part-time at a job she loves.

RACHEL

William is just about to finish his first year, of three, of post-16 education. He remains in the same school, where he has developed very strong bonds with the other young people as well as with teachers and care staff.

The weekly phone calls from school remain fairly predictable, with the odd surprise - but always on a positive note. He is becoming more helpful - cleaning, tidying - although this behaviour has yet to show itself at home where his bedroom continues to be a restricted zone. I occasionally venture in with cleaning materials and protective clothing, reappearing several hours later with piles of dirty washing, black bags full of rubbish and a bucket of dirty water.

At school he has adopted his role of peer mentor with great responsibility and guides the younger pupils there in the right direction. They seem to listen to him. After all, he knows the consequences of delinquent behaviour, has no desire to go back to his old ways and genuinely wants to make sure that others don't make the same mistakes.

I still, however, worry about his future, although what parent doesn't? I realise he is in a very special, protective environment at the moment but when he leaves things will possibly be very different. But he does have several opportunities available to him: he's been offered an apprenticeship at the garage where he works one day a week for his industrial placement, when he finishes school, and depending on his exam results he could always continue his education.

He still, unfortunately, can be influenced by negative behaviour, and I fear he has a predilection for substance misuse. He has made several attempts to give up smoking - at Christmas he gave up for four months, and now after another couple of months he seems to have stopped again. And he takes no care of himself - washing is not on his list of priorities and his hands are covered in grazes, cuts, burns - from his soldering iron, etc.

I wouldn't trade him in for another model though now. He's a lovely lad and makes me proud. He's very talented in maths and computers and the sciences in general. Up in his room I often find him on his computer working out some complicated electrical circuit with some software he's found, or researching how to make a water-cooled computer, or how fridges work. He has an enquiring mind and a practical nature.

He's also proving himself to be a good help around the house. I store up lists of things that need fixing and he always does a good job. When he comes home for the holidays now the garden gate needs a new hinge on it. That's one for William.

JOHN

John was a foster carer who had dedicated much of his professional life to supporting adolescents that had lost their way and whom no one else wanted. He wrote about one of his charges, Sam who arrived at John's house with a suitcase full of drugs for a long list of conditions. It later transpired that the young man was not mentally ill but had Aspergers. John set to work researching Aspergers and slowly educated Sam about his condition, with patience, John's support and trial and error, Sam clearly benefited greatly from John's phenomenal ability to reach and support the teenagers that no one else can help.

My life has changed dramatically--I have kind of retired. I am no longer working with the young men but am working in a plant nursery a couple of days a week. I also live 15 minutes from my daughter who has three acres of land on a lake. On my days off I go there and garden. I felt that after 45 years of working with adolescents that it was enough. I have a small basic apartment--can leave my stuff lying around--and do whatever I feel like (which isn't much). Fishing, gardening, and family consume whatever time I decide to allot to others. I joined up with facebook and now a number of kids from the past are connecting--the memories and reminiscing is great.

Sam is now living with his father and grandmother. I haven't talked to them but he calls occasionally and sounds the same.

JANE AND JAMES

Right Here, Right Now Part 2

It's almost exactly 18 months since I wrote my chapter for the book. I've been asked to write an update to show how things have changed (or not) in the ensuing time regarding my daughter and her ASC.

Some things don't change very much. Yesterday I took a day off work to be with Louise as it was her half-term week and I didn't want her to spend the entire week at home locked into her computer. I suggested various options, trips to new places with plenty of preparation, trips to familiar-ish places, slightly further afield but which we have been to before, In the end, we went to our local shopping centre. We were there only last Saturday. As I traipsed through The Entertainer (toy-shop) with my nearly nineteen year-old, six-foot tall daughter I REALLY wanted to open my throat and SCREAM and then rush round and sweep everything off the shelves and create mayhem and chaos at the complete and utter boredom and frustration of it all. But I didn't. I stuck to the script and Louise had a happy time.
So that part of our lives remains unchanged. Completely.

However, the end of Louise's' school career looms. I am shit-scared at the prospect of change and leaving the soft cocoon which her school has provided over the last seven years. But we are preparing for the next stage after a vast amount of investigation and planning. She has been offered a place at a local college to do an Animal Management course provided she completes a year's Skills for Life course at an adjacent campus. We are reasonably happy with the set-up of the course which will involve a group of other young adults with learning difficulties but not all autistic. Louise does not like to be associated with the Downs Syndrome people or those with a physical disability but as the course tutor says, they will all have to deal with it. "This is an adult course for young adults" she says.

We are waiting (and waiting) to have absolute confirmation that the local authority are definitely going to provide funding for transport but Louise's' transition worker insists this is a formality.

As parents we have had to do all the legwork ourselves. Louise's school seems to have lost interest and doesn't really know what to do with it's young people who are on the verge of leaving. However, Louise is, in some ways, looking forward to leaving school where they mostly do tend to talk to them like they are all 4 year olds.
Another development is counselling! Earlier this year we had a series of disturbing incidents where one of the boys in her class was using the most obscene language and directing it at Louise. She actually had a series of panic attacks and couldn't get it out of her head. This eventually resulted in our sympathetic GP providing access to Youth Counselling. Louise has now been for several sessions and the counsellor said she was au fait with Asperger's. At first, cynical me, I couldn't really believe this and explained that Louise probably wouldn't talk. But, although I am not privy to their talks, I understand that Louise DOES talk to her counsellor and comes home with strategies to help her with her various worries. This is so encouraging as it has proved to Louise that we, her parents take seriously what she says and that she can talk to someone outside her immediate circle (me and James) about her hopes and fears. She has also stopped pulling out her eyelashes, after many years, with such ferocity and a thick set is slowly starting to reappear which is very moving to see.

We also started attending a local slimming group together, which has proved to be a great success. Louise has lost a considerable amount of weight and had received many compliments on her appearance. The women at the group always greet her and accept her and it is a sort of social occasion for her and for me.

So there are lots of positives going on as Louise gets older. I am desperately hoping that the transition to college and the adult world is going to work out positively for her. It's going to be an interesting time!