George Handley, who has Asperger's Syndrome, is two years younger than me was referred to a Psychologist by his Infant school in May 1984 but unfortunately for him, the diagnosis didn't come until eleven-and-a-half years later, in December 1995.
This is a 1984 referral.
Date of report: Friday, 18th May 1984
Report on George Handley
George was transferred at the age of five years and seven months by the school medical officer. At this time there was concern that his speech was not normal, he showed odd movements of his arms at times and had difficulty fitting in socially with the other children.
Medical Assessment
Dr Knight-Jones looked at previous medical notes and asked his mother about him. There are two older girls who have no problems, although one of them had difficulty in settling down in school when young. The pregnancy and birth were normal and he was a good birth weight and was in good condition when born. He had no medical problems as a baby. He was far from slow in his early development.
George was in the nursery class at William Booth Infant School and is now in the Infant class. His parents do not feel that they have any problems with him at home. However he does like to have his own way and gets bored quickly. Dr Knight-Jones examined George medically. He was of average height, weight and head size. His heart, lungs and so on were all healthy. He did show unusual movements of his arms, which are thought to be a habit and appear when he is excited or concentrating hard. He was able to do most of the things expected of a child of his age except that he was not able to dress himself and is apparently usually dressed by his mother. He is not usually given shoes, which require laces or clothes with buttons.
George was also seen by Dr Mellor, the paediatric neurologist. Both doctors found a degree of clumsiness. It is not felt that this is due to a disease. It is not going to get worse but will tend to improve. He has not got any medical illness.
Mobility and Hand Skills
The physiotherapist looked at what George was able to do on his feet and his control of body movements. He seemed to have difficulty in understanding her instructions and she had to show him what she wanted him to do. He could just manage to hop and was overall a little clumsy but had no real disability. The occupational therapist, Mrs Brown looked at what George was able to do with his hands. She noticed that at times he became excited, laughed, talked loudly, lost his concentration and showed odd hand position. George was right handed. He found it difficult to thread small beads and do other things with his hands but managed to do them. He had no difficulty copying shapes and block patterns or using a six-shape jigsaw. He had an immature grasp of his pencil. He drew a slightly immature man. He needs to be encouraged to dress himself and it would be helpful if he held a pencil in a normal way now he is a big boy. He finds coordination of his hands a little harder than most children and appears to have to make more effort than most, which on the whole he does successfully.
Speech Development
Miss Whiting, the speech therapist tested George’s understanding of speech and spoken instructions. Rather surprisingly George only performed at a four-year level. She also assessed what he was able to say. He pronounces his words satisfactory apart from a small lisp. He uses the kind of sentence length you would expect of a child of his age. However he does sometimes make mistakes, leaving out words, occasionally putting words in the wrong order. Sometimes he mixes up “we” for “they“ and “you” for “they”. In conversation he sometimes says unsuitable or inappropriate things for example when asked, “where’s that house?” he replied, “well it isn’t really”. Sometimes, when asked a question, instead of listening and answering the whole question he makes an answer, which refers to only one word of the question. It can be seen that this can be rather unhelpful to George. He can make it difficult for him to understand what he is asked to do particularly in school. It can make it difficult for him to join in games with other children. When his mistakes are pointed out to him he is able to understand what is meant and to answer the questions correctly. It is important that this should be encouraged.
Nursing Report
Nursing staff found at times George tended to avoid looking at people or things. He also showed the odd behaviour when excited of flapping his hands, jumping up and down, laughing and giggling. He ate his meals satisfactorily and could go to the toilet on his own although he needed some help in arranging his clothes afterwards.
Hearing and Vision
George responded very satisfactorily to the hearing test. With his glasses on he sees perfectly and no other abnormality was found in his eyes. He should continue attending the Queen’s Medical Centre eye department.
Dental Report
His teeth were examined and no abnormalities were found.
Developmental Assessment – School Health
Dr Green from school health had originally seen George at the Greenwood Centre at the age of four years nine months. At this time she gave him a standard intelligence test for preschool children and his score on this was average. At the time he was cooperative and showed a delightful sense of humour. He was noted to be slightly clumsy. When Dr Green saw him again on the occasion of the present assessment at the age of five years seven months he was not so cooperative and seemed very quiet. He did not do much more on the intelligence test than he had done on the previous occasion. He was not cooperative and therefore it was not possible to score him.
After the assessment those who had seen George met to discuss him at a case conference. His teacher Mrs Williams, the school nurse, Ms Joyce and the educational psychologist Miss Steward were all present. His teacher said that he did not have any problems with schoolwork but did find it difficult to mix with the other children. He was not naughty in school but had been noted at times to misbehave when his father fetched him.
We feel that George at present has some mild problems. These are:
1) Difficulty in using speech to communicate with meaning and some difficulty in understanding spoken instruction. 2) Clumsy Child Syndrome. This does not stop him from doing anything but does mean that he has to make more effort to coordinate his body. 3) Difficulty in mixing with the other children; sometimes his behaviour appears difficult to control at home.
We feel it is worth doing all we can to help George get over these difficulties at the present stage. Although his sister had somewhat similar problems and then settled down well at school one could not be certain that George will do the same. Boys often do less well than girls with these kind of difficulties. George has been invited to attend a group of children with similar difficulties being helped by the speech therapist and the occupational therapist at the Greenwood Children’s Centre on Friday afternoons.
At home it is suggested that parents:
a) Make sure that George does not succeed in getting what he wants by naughty behaviour. b) He is encouraged to give suitable answers in conversation. c) He is encouraged to do more for himself and behave in a more mature way.
We feel that George has average mental ability. Provided that his present difficulties can be overcome he should be able to settle down at school and make friends of his own age. George will be seen in the follow up clinic at the Greenwood Children’s Centre. Mr and Mrs Handley have been informed of the Attendance Allowance and the Rowntree fund for families of children with handicaps.
George Handley is from a working-class background like myself. His original referral came 16 years before mine and that was initiated by myself! However, at least he was referred and they could identify that he was having problems. I saw this on his website in May 2001, and I quote....."I even had special needs teachers for PE. In Textiles, I had trouble threading the needle as threading the cotton through the tiny eye in the needle that I used to think that I needed a microscope to do the job properly. The teacher was disturbed from helping the rest of the class on several occasions to be in aid of my assistance. One may have opted out of that subject at my age as sewing is regarded as a girl's hobby. But the needle and thread problem always meant trouble for me and almost failure of the completion of my tapestry set as class work".
Marc Segar was born in April 1974, so he was of my generation. I don't know if he died accidentally in a car crash or if he committed suicide in December 1997 at the age of 23, but if he indeed did commit suicide, the title of his publication is cruelly ironic.
It makes me wonder what Marc Segar would have achieved had he lived. We will never know now of course. He seemed to be a very intelligent man and had a lot of insight into his condition but if he committed suicide then it is obvious, that despite the title of his book, he didn't fully at least, know how to survive.
After seven years in a special school, Marc Segar was transferred to a special school until he was 14 then he was transferred back to mainstream school until he did his GCSE's and A-levels then went to the University of Manchester to complete a degree in Biochemistry. Something must have been spotted by, A) His parents or B) The mainstream school he attended. Perhaps Marc Segar's school were progressive and alert to special needs.
Marc Segar was from a middle-class background. I am from a solid, strongly working-class background. He probably had better educated, more articulate, and more aware parents than mine, but even so, that is no excuse. If they could have done it for him, they could have done it for me, and other people with AS of the same generation.
At the front of the book "Let me in: Access and Inclusion for Children with Autistic Spectrum Disorders", by Matthew Hesmondhalgh and Christine Breakey, which I read in February and March 2002, Richard Exley, who is also just over two years older than myself, writes in the foreword "Looking back on my own childhood I knew something was different about me even before I received a diagnosis with Asperger's Syndrome on 17th January 1989".
Then Paul Drennan, who has Asperger's Syndrome and was born on Friday 5th December 1980, writes on the Autistic adults picture project "I was initially diagnosed with Asperger's in February 1992". Stupidly and ridiculously, he was then rediagnosed as General Learning Disabled in September 1994, and then back to Asperger's Syndrome in November 2001. How can you have AS and be General learning disabled when most people with AS are of average or above average intelligence? It is a specific learning disability.
I rest my case. Nothing further to state m'lud, apart from, whilst obviously much more could, and should have been done regarding myself, and that I was clearly neglected by the Infant and Junior schools, and especially Secondary school I attended, I recognise and realise that I have to move on with my life. I am not the sort of person who forever lives in the past, and anyway, I can't alter what has happened.
What happened to me in the past however, provides an example of what can occur when ignorance and negligence occur regarding Autism and AS. I hope my experiences haven't been in vain, because I would like them to be used as a further reason to diagnose people with AS and Autism as soon as possible, with no delays whatsoever. The experiences of myself and various other people in life, undiagnosed with AS or Autism until their 20's or 30's, also show why early diagnosis is essential.
You may say to me "At least you know you've got Asperger's Syndrome. You got diagnosed when you were 23 years, almost 24 years old. Many people have been 50 or 60 years old when they learned they had it. There are also many who didn't find out at all". My response to that is no-one should be diagnosed so late and if they are diagnosed at 50 or 60 years of age then I feel sorry for them.
I am also grateful that I had to fight to get a diagnosis in February 2000 instead of having to do so in February 1950 or February 1970 and also, it wasn't a long fight either. Or in February 2020 as diagnosis waiting times are much longer today. I didn't have wait 12 or 18 months for a diagnosis. I dread to think what would have happened if I had, because by this point I had reached breaking point. I regard myself as being fairly mentally tough and resilient, but everyone has their limit to what they can take and I think I would have snapped as time went on and had a full on breakdown.
Regardless of what anyone may say, if diagnosed at early school age, a full and comprehensive assessment of difficulties, weaknesses and strengths could be made. School's, mainly NT children and Teachers, may find people with Asperger's Syndrome or Autism difficult to understand but they will find them even more difficult to understand if they are unaware of the condition or unaware of the fact that a pupil has got either condition.
It isn't a case of labelling or not labelling but supporting the individual with AS or Autism. I would have responded better if I had been placed within a quiet, well-organised environment, at Infant, at Junior and at Secondary School.
You may ask "What difference would it have made if you were diagnosed in 1991 or in 1990 or in 1989 or even 1982?". I think of how I have improved since I learned of the condition. Just think of the improvements I would have made had it been 10 years earlier? They would have even been much greater than the ones which I have made in recent years. A diagnosis in 1991 or earlier could have helped me enormously in my life after I left school. It would have made me able to understand myself a great deal earlier than when I did.
If we can diagnose people who have Autism or AS fairly early then it will save a lot of trouble all round. The child learns to understand him or herself and realise what the problems he/she has and learn, with adult help, to avoid them. Those who have AS need detailed, explicit and repeated Teaching about this. They could be taught, or even need to be taught, not to say things what people regard as socially embarrassing. Things such as "That man's fat isn't he?" or to Teachers "Why are your lessons so boring?".
