Asperger Syndrome – A talk given by Carolyn J Baird BA(Hons) at the Newcastle-Hunter ADHD Support Group Meeting on February 16th, 2000
I would like to mention at the outset that much of what I talk about tonight may sound very familiar to many of you. That’s because many children with Pervasive Developmental Disorder – otherwise known as PDD – of which Asperger Syndrome and Autistic Disorder are two of those, do meet the diagnostic criteria for ADHD. The 4th edition of the Diagnostic and Statistical Manual of Psychiatric Disorders – known as the DSM-IV – prohibits diagnosing ADHD when there is PDD since all the ADHD symptoms can be attributed to PDD. However I have heard of many cases where dual diagnoses of a PDD disorder and ADHD have been given or PDD symptoms have been entirely overlooked and the individuals incorrectly diagnosed as having ADHD only.
But before I elaborate on this, perhaps I should introduce myself to you and tell you a little of my background.
My name is Carolyn Baird, but I answer more easily to Carolyn than to anything else…. apart from Mum or Nannicas…. and rarely use my surname or the letters that could follow it.
I don’t appear in public very often but lead a reasonably quiet life – some would say I deliberately avoid social contact, but I am in communication with others all the time even though I don’t make face-to-face contact with anyone very often. I am much more comfortable working behind the scenes and ‘doing my own thing’, so I suspect that few of you know anything about me or have even heard of me before.
I believe that my primary qualification for being invited to speak here is that I am the mother of 4 children, all of whom have characteristics that place them well within the Autistic Spectrum, although not all of them have official diagnoses that reflect this.
Chris, my oldest son, now 29, has had a variety of labels since age 3. The last on a long list is Asperger Syndrome obtained 3 years ago from Dr Tony Attwood in Brisbane. Dr Attwood is internationally renown for his understanding and knowledge of Asperger Syndrome and Autism and seems to spend more time overseas on lecture tours than in Australia since the publication of his latest book “Asperger’s Syndrome: A Guide for Parents and Professionals” 18 months ago.
At 7 years of age, my second boy, Tim, now 27, was declared to have an Emotional, Behavioural Disorder as the result of having a ‘neurotic mother’. Two years later he was considered ‘gifted’, although his schoolwork never reflected that.
At 5 years of age, my youngest son, Tony, now 25, was declared to have a severe Speech Disorder and at 12 he was diagnosed with Specific Learning Disabilities.
All 3 boys were regularly condemned by their teachers for their lack of social skills throughout their primary and high school educations.
My daughter, Helen, now 13, was diagnosed with Multiple Developmental Delays and Behavioural Problems at 3. Although at that time Autism was considered it was discounted on the basis of her ‘obvious intelligence’ and the claim that she had made eye-to-eye contact with one of the assessment team. At 4 years of age she was considered to have Semantic-Pragmatic Disorder and finally received the diagnosis of Autism at 6 years of age. Helen has been reassessed a number of times by various specialists since then and is still considered to have ‘higher-functioning’ Autism.
Every specialist who has tested my children over the years has ‘blamed’ me for their condition…although in the past 7 years no guilt has been attached to that blame. Instead they have reported that “the child’s mother presents with many identifiable autistic traits indicating a strong genetic component to the child’s autism”. The most recent of these specialists going as far as to enquire if I wanted an official diagnoses for myself. However since I had previously been assessed privately (that is unbeknownst to any of Helen’s specialists) as having autism, I had nothing to gain in having it officially declared on her reports and possibly more to lose considering the prevailing attitude to people with autism then and now.
Academically I am able to hold my ground as well. For the past 25 plus years I have pursued my own studies and research into the peculiarities of my family.
In 1988 I completed a Bachelor of Arts and in 1989 my Honours degrees at Newc astle University in Linguistics. My secondary motive for choosing Linguistics wa s that it gave me the opportunity to undertake cross-disciplinary studies and re search rather than focusing solely on either the biological or psychological asp ects of our problems which I saw primarily as ‘language-based’. The primary moti ve though was to find out as much as I could about language so that I could lear n not only how to use language like other people but also how others interpreted all aspects of language. In particular body language which experience had taught me was one of my weakest skills. With the information I obtained during my course I was able to modify and vary my own language to meet the demands of most social occasions and I was also able to help my children by teaching them in what ways the spoken language of others differed from ours. Our natural spoken language in many respects bears a closer resemblance to written English than spoken English – not surprising since 3 of us have learnt to read before we spoke our first words (a condition often referred to as Hyperlexia). My youngest son, Tony, was the only one who had difficulty in learning to read and was unable to read at the time he started school and has never been known to ‘read for pleasure’ like the rest of us constantly do. For him reading is a chore that you only do to acquire specific information.
After completing my degrees I did start a PhD but discontinued it after 3 years for a number of reasons. But primarily because once I’d discovered some of the ‘answers’ I’d been seeking all my life the motivation to ‘search for more answers’ was supplanted by a much more powerful motivation to find ways to use my acquired knowledge to help my children.
I have had Internet access continuously since August 1990 and have been on the Autism Mailing List since its creation in April, ’92. It is hosted by St John’s University in NY and was the first and is the largest Autism-related list on the Internet. I am the elected autistic representative on the Autism-Panel of listowners for the list – a position I’ve held for the past 3 years.
In July 1994, I created the first of my own Internet mailing lists, PAN-L, an International list that provides personal and emotional support for relatives and individuals with autism or related-disorders. In February 1996, a friend and I created the OzAutism list for autism-related discussions and support for Australian and New Zealand residents and later that year I created PAN – a discussion list for the members of PAN-L. I also act as co-listowner of Autinet (an International general autism discussion list in Ireland) when the listowner is absent from his computer.
OzAutism, PAN-L and PAN are all hosted by Hunter APANA, which is a region of the Australian Public Access Network Association. Created in 1991, APANA is the oldest national and the only remaining non-profit, non-commercial Internet Access provider in Australia. APANA has 9 regions throughout Australia. I am currently the Co-ordinator for the Hunter Region and the Hunter’s representative on the Management Committee of APANA Inc. APANA is a totally voluntary organisation but many who offer their services free-of-charge to operate the APANA network are the employees of commercial ISPs. APANA has been and still is the training ground for anyone considering a career in the Information Technology Industry. It is a ‘club for computer geeks’ but anyone can join provided they agree to abide by the terms of our Acceptable Use Policy and Conditions of Membership.
I hope from this summary you have gained a feeling for ‘who I am’ and why I have been asked to speak on the subject of Asperger’s Syndrome.
When I accepted the invitation to speak at this meeting on this topic a few months ago, I thought it would be an informal gathering and that I would only be required to speak briefly and then answer a few questions of a personal nature – very similar to what I’ve done at the beginning of most years with my daughter’s new teachers.
However on seeing the flier that was produced for this occasion and being told that my audience would probably know ‘little to nothing about the condition’, I decided to present to you a broader less personal or detailed account. In this talk I hope to not only tell you of my own experience with Asperger Syndrome and how it has manifested in my family but how others, in particular researchers and other professionals working with AS individuals view the condition.
I would like to stress that my aim tonight is not to give you ‘all the answers’ but to instead give you ‘some of my answers’ in the hope that when you leave here you will have a better understanding not only of the condition but also of those of us who live with it in varying degrees. For those of you who have a greater need for more detailed information, I believe I will be able to save you some time by directing you to some of what I consider to be the more reputable sources for information.
OVERVIEW: The history of AS.
During World War II, two Austrian re searchers (Dr Leo Kanner in the US and Dr Hans Asperger in Austria) were simulta neously but unbeknown to each other pursuing the same line of research involving children who had previously been considered to have a disorder known as ‘childhood schizophrenia’. Their interest in the subject appears to have been sparked by their observations that unlike adults with schizophrenia whose first symptoms did not manifest until puberty and whose condition deteriorated rapidly without treatment, these children appeared to have the condition from birth and manifested their first symptoms in the first two years of their lives with it becoming most noticeable after they started school. The other noticeable difference they observed was that these children actually made some progress and there were no signs of deterioration in their condition as they aged. There is also quite a bit of evidence to suggest that Asperger had another motive for undertaking this research – to protect these children from being killed by the Nazis.
It was coincidence that both Kanner and Asperger referred to this condition as ‘autism’ from the term coined by Bleuler in his 1934 paper to describe a symptom of schizophrenia where the sufferer withdraws within himself losing contact with the outside world. Kanner referred to his group as having “early infantile autism” while Asperger chose the label ‘autism’ to define the basic disorder.
Kanner was the Head of the John Hopkins Clinic in Baltimore while Asperger, who was 10 years younger, was a GP working on his second doctoral thesis as a member of staff at the University Paediatric Clinic in Vienna. After the war, Asperger was appointed to and held the Chair of Paediatrics at the University of Vienna for 20 years.
Kanner’s paper “Autistic disturbances of affective contact” was published in 1943 and Asperger’s which translates as “Autistic Psychopathy of Childhood” in 1944.
Kanner’s paper was immediately accepted by the English-speaking world as the authoritative work on autism and he has subsequently become known as the “Father of Autism”.
Asperger’s paper on the other hand remained unknown in the English-speaking world until it was translated into English in 1979 (the year before his death). And it only began to draw worldwide attention in 1991 when its English translation was published for the first time in Uta Frith’s book, “Autism and Asperger Syndrome”.
Kanner’s original study was based on observations of 11 children he considered to have the disorder. They were younger and had delayed or deviant language acquisition. Asperger’s group on the other hand were referred to the clinic for remedial treatment for educational difficulties. The clinic had been in operation since 1918 and since Asperger acknowledged the contribution made by his predecessors and co-workers, it is apparent that he had many case histories at his disposal to follow up on to support his prognosis of the long-term outcome for these children and that the age spread of the individuals in the study was extensive. Although it’s unclear actually how many individuals were involved in it, it is assumed to be a significant number.
Despite the fact that both Kanner and Asperger listed very similar criteria for the children they described as having autism, including acknowledging that some children displayed average to above average intelligence and were able to speak, secondary influences (subsequent studies and media attention) based on Kanner’s study led to the wide-spread adoption of the stereotypical image of the autistic child as being non-verbal; oblivious to his surroundings including the people in it; indulging in repetitive movements and mentally retarded. This stereotype is still considered ‘classic autism’ today. But while both Kanner and Asperger acknowledged that these children existed both of them considered these children to be at the extreme lower end of the spectrum with possibly co-morbid conditions compounding the severity of their autism and not a true expression of the condition they described as autism.
Since 1991, when Asperger’s paper appeared in its English translation his inc lusion of people with average or above average intelligence created a considerable amount of controversy, as usually happens when long held beliefs or attitudes are challenged, over whether Kanner and Asperger were describing the same disorder. However it should have been understood that both men were only trying to convince others of the existence of the disorder at the time their papers were first published and were expecting followup research to yield a more comprehensive set of criteria for ‘autism’ and to distinguish any subsets of the disorder that existed. That this did not happen for almost 40 years seems to be due to the creation of image of the stereotypical autistic child as the only true manifestation of the condition and describing all other variations as ‘milder forms’ with the implication that this group didn’t need any additional help and should be considered fortunate that their condition wasn’t more serious.
This is an attitude that still widely persists, even within groups of parents of autistic children. Parents of younger or lower-functioning children are generally intolerant of the problems faced by or envious of parents of older higher-functioning autistic children and are sometimes surprised to hear that despite the fact that our children have been recognised for their intelligence they still exhibit behaviours and difficulties in the same mould as their children but that their problems are exaggerated by being expected to interact with society in a way that is unnatural to them. Many autistic individuals and their parents sometimes reach a point where they actually wish they’d been born more severely affected so that there would be more help available to them and society’s reaction to them would be more sympathetic than critical. What usually is the case though is that the harshest criticism comes from other family members so there is often no escape from the criticism of others for the autistic child or his parents.
Still the greatest impact of Asperger’s study has been the recent acceptance of autistic individuals with average to above average intelligence as belonging on the ‘autistic spectrum’ – a term coined by Asperger himself. This has not only improved the support available to this group but has improved the attitude towards all people with autism. As a direct result of his paper many non-verbal autistic children are no longer automatically assumed to be of low-intelligence and have been given opportunities to develop some form of non-verbal communication skills to assist in their education.
The dark ages of autism are slowly retreating from us now. This was the period of four decades in length when parents were advised that they should institutionalise their autistic children and forget about them, as there was no hope that their children could ever lead independent lives. In the last 20 years of the dark ages this message changed slightly to “there’s no hope unless you put your child into our overly high-priced and intensive training program”. It’s true that some children who were involved in these ‘training programs’ did show substantial progress or even appear to ‘recover’ and so the ‘miraculous cures for autism’ stories started appearing in the media and any parent who failed to try at least one of these treatments was further burdened with the guilt of being negligent as a parent.
WHAT IS AS?
Asperger syndrome (AS) is considered to be a severe developmental disorder characterised by major difficulties in social interaction, and restricted and unusual patterns of interest and behaviour.
The term Asperger Syndrome was introduced to account for Asperger’s inclusion of individuals with average or above average intelligence so as not to cause additional controversy in the debate over whether lower-functioning autism and higher-functioning autism are the same condition.
It is currently used for those who meet a significant number but not all of the criteria for a diagnosis of Autism. It is more commonly applied though in most cases for older children or adults being diagnosed with the condition for the first time where there is limited or no available evidence of any significant language acquisition delays in their early lives. It is therefore the most common diagnosis that a higher-functioning autistic person will be given so in the real world they mean the same thing.
When I use the term ‘autistic’ I am referring to those diagnosed with Asperger Syndrome and PDD-NOS and not only those with Autism.
It does however appear that there are several forms of higher-functioning autism, and Asperger’s syndrome is just one of those but the others if they exist at the moment are unnamed so Asperger’s Syndrome and High-Functioning Autism are the only two categories that are frequently used to distinguish possible sub-types.
The theoreticists are still debating whether high-functioning autism (HFA) and Asperger Syndrome (AS) are different sub-types of higher-functioning autism; whether AS lies in the intersection between Autism and ADHD with HFA on the Autism side and AS on the ADHD side; whether ADHD is a subset of AS which is a subset of Autism which itself is a subset of PDD or the minority view of which I am a supporter where ADHD is seen as the polar opposite of Autism. I will discuss my reasons for believing this later since I believe that to understand my reasoning you need to know more about autism first.
I also support the view that HFA and AS are different sub-types and that the particular sub-type can be determined by examination of the results of a standard IQ test. The typical autistic graph of scores for sections of the IQ test resembles a zigzag pattern with numerous peaks and troughs and over 20 points between total Verbal and Performance IQ test results. So preliminary HFA sub-type could be defined as those whose Performance IQ exceeds Verbal IQ by 20 points or more and AS where the Verbal IQ score is greater.
In short there’s still a lot of work to be done before the taxonomy of these conditions reaches a stage where they can provide an adequate means of classifyi ng any of these conditions. Without that there is little point to having a specific label except for the purpose of getting funding for appropriate treatments and specific services for the child who has one of these conditions. Unfortunately some labels are quite useless at present in getting much help at all while if you are fortunate enough to find a specialist who will assign one of the others ‘doors will open’ and everything you need will be made available. Hopefully this will change and the powers that be will recognise that ‘subsets’ do not equal ‘milder’ forms of a condition but instead each subset has a related although different set of criteria. And each of them can manifest on a continuum from a severe expression of the condition to a mild one with the extreme mild end being almost indistinguishable from ‘normal’ regardless of the hierarchical structure of the categories or the level in that hierarchy the condition occupies.
The DSM-IV produced in 1994 listed for the first time the diagnostic criteria for AS and changed the entry for Autism to describe it as Autistic Disorder.
It lists the criteria for Autistic Disorder as (cf PDD – http://www.autism-soc iety.org) and if you compare that with the criteria for Asperger’s (cf PDD – http://www.autism-society.org), the only differences between the two is in the number of c riteria required to meet the condition with two exceptions. The first is the spe cific distinction involving language delay. In Autistic Disorder there is signif icant delay or lack of the development of spoken language whereas in Asperger’s it states there is no clinically significant delay. The other interesting except ion is that while Autistic Disorder doesn’t make reference to ‘self-help’ skills – Asperger’s does in that it states ‘There is no clinically significant delay in the development of age-appropriate self-help skills’ so Asperger’s should be ruled out in cases where this occurs and instead the diagnosis should be Autistic Disorder or Autism. Yet almost every documentary I’ve seen on Asperger’s Syndrome has shown people who do lack some ‘self-help’ skills even as adults. PDD-NOS is another ‘Clayton’s term’ for Autism -if it’s not recognisably Autism or Asperger’s, it’s PDD-NOS. So it’s no wonder that the labels confuse parents. It could be that many of those who diagnose the condition are also confused or, which is the more likely, think they are saving the parents some anguish by giving the ‘nicer, less shocking’ label even though it means that the parents will encounter much greater problems in trying to get funding for treatments or services for their children.
Since these sets of criteria were produced – although these are THE diagnostic criteria which are all that need to be applied for an official diagnosis – various other ‘symptoms’ have crept into the literature which are considered by some to be specific to one or other of the conditions. This is how the list of criteria for AS has grown to include all those for ADHD. Many of these criteria, I believe, are indicative of different sub-types rather than being applicable to the parent disorder. AS is clearly in danger of becoming a ‘waste-bin’ label for anyone who for whatever reason doesn’t fit the ‘classical mould’ for any other condition. Unfortunately others base many of the features of ‘classical autism’ on a lot of invalid assumptions and assignment of motives without an understanding of or an appreciation for the reasons underlying the behaviours of autistic individuals.
There is no behaviour of any autistic child that is not ‘a normal human behaviour’. Any human being can be induced to act in an autistic-like manne r under specific conditions. It is those conditions that should have been the fo cus of research in the last 50 years rather than the mere listing of behavioural criteria against which individuals have been matched or the hypothesising about how autistic people think or don’t think as the case may be. Many researchers h ave displayed monumental arrogance in considering only their own perspective whe n interpreting for the rest of society why autistic people behave as they do. By not allowing any leniency or consideration of the uniqueness not only of personality of each and every individual on this planet but of the specific environmental conditions under which we have lived throughout our lives, they have failed miserably in gain any insight into the autistic mind whatsoever. Of course that has been true for all of the ‘Psychiatric Disorders’. Fortunately most of these are now being moved ‘off the couch’ and ‘into the laboratory’. A lot of medical research is currently being carried out around the world to identify not only the medical characteristics of the disorders but to also be able to establish a pathology for the conditions. This should enable a definitive test to be designed to correctly label each distinct condition and more importantly to distinguish between the conditions for the purpose of being able to design more effective treatments and remedial programs.
WHAT CAUSES AS?
There seems little doubt that the condition is genetic in origin although not restricted to a particular gene but instead appears to be polygenetic and may even involve more than one chromosome. One recent genetic study has implicated Chromosomes 4, 7, 10, 16, 19 and 22 of which 7 seemed to be the most significant with 56 out of 87 families tested having this abnormality. While others have suggested Chromosome 15 as another possibility.
Claiming that autism is genetic in origin doesn’t necessarily mean that it is inherited. Genetic mutations can occur at any stage during the gestation period or even before then in a particular ova or sperm so having one autistic child doesn’t necessarily mean that any other person in the family has to have the condition for it to be considered genetic nor does it mean that the children of an autistic person will be autistic themselves.
There is general agreement now amongst researchers that Autism is a biological disorder rather than a psychiatric or psychological one. Nor is it strictly speaking only a neurobiological one – the aberrant body chemistry is evidence of that. It is a condition that affects the WHOLE body – in fact every cell in the WHOLE body and not just the brain or a particular part of it. But it is not a disease and while it is generally regarded as a genetic disorder – the use of the term ‘disorder’ implies that it is the ‘wrong way to be’ so I prefer to call it a ‘genetic condition’.
IS THERE A CURE?
The answer is NO! There is NO CURE. Autism is a lifelong condition and the severity of the symptomatic behaviours ca n re-appear at any age even in those individuals who are claimed to have ‘recove red from their autism’. However, having said that it CAN, doesn’t necessarily me an that it WILL. For as an autistic individual matures they develop coping strat egies to mask their deficits; learn what is considered ‘normal appropriate behaviour’ and to emulate it and are able to control their environment to a much greater extent than they are able to do as a child. For instance many of the ‘supposedly aggressive behaviours’ of autistic children are the result of Anxiety Attacks. Whereas an adult autistic usually has the control to be able to absent himself from an uncomfortable situation before it manifests into an Anxiety Attack (often referred to by autistic adults as ‘meltdowns’), autistic children are not allowed under most conditions to do this so the ‘fight or flight’ reaction is invoked much more regularly and trying to exercise control over the child in this state only exacerbates the behaviour. If the child has no escape from the situation he will eventually reach a stage of mental and emotional exhaustion and will go into ‘shutdown’ mode, which can send the child into a faint or catatonic-like state.
THE POSITIVES AND THE NEGATIVES:
At an individual level, an Autistic Spectrum Condition can easily be identified and distinguished from other conditions by sensitivity issues of the nervous system in general but in particular those involved with the senses.
A child who has a hypo response to all stimuli is unlikely to be autistic. However being hypo to some while hyper to others is an indicator of autism. While the more responses there are within the normal range the milder the autism tends to appear – that is the less the child will exhibit autistic behaviours while still having other traits that can be identified as ‘autistic-like’.
Many of the behavioural criteria considered indicative of autism are attributable to difficulties experienced by the child because of sensitivity issues.
Any child with a hypersensitive nervous system if exposed to high levels of t hose stimuli that he is hypersensitive to for a prolonged period will exhibit all the signs of being hypo in that area but usually not before he experiences a ‘meltdown’. In these cases the ‘hypo’ state is equivalent to the ‘shutdown’ of the area of the brain that processes that stimuli. Being able to go directly from ‘hyper’ to ‘hypo’ mode at will without going through the ‘meltdown’ stage is a coping strategy that many autistics develop at some stage in their life. Being able to ‘turn-off’ at will is the only effective way most of us have to combat these difficulties although there is some evidence that ‘de-sensitisation’ may work for a particular child if the problem is recognised early enough and the procedure applied correctly. If not done correctly it may facilitate the development of the usual coping strategy earlier than would naturally occur. In some areas this won’t cause many problems while in others it can have disastrous effects.
Many autistic children have the following sensitivity problems:
THE EYES: Photophobia with or without scotopic sensitivity. Extremely sensitive to light, these children usually also lack depth perception and may appear to be extremely clumsy or have problems with gross motor activities. They may also prefer to use their peripheral vision for viewing objects or people or maintain their eyes in a lowered position thus giving the appearance that they are avoiding eye-to-eye contact. Wearing sunglasses even indoors or Irlen lenses from an early age can help desensitise the visual system and allow improvements in depth perception. Removing all fluorescent lighting; having walls painted pale blue or grey instead of white or some other colour may also help.
THE EARS: Sensitiv ity to noise. Even at moderate levels – such as the normal human speaking voice – can be extremely painful to an autistic child. Pitch as well as volume can play a part too. If your child gets ‘aggressive’ with some women but not with men who often speak more loudly than women then suspect that it could be the pitch of the woman’s voice that is the source of the problem. Auditory Integration Training is a procedure that has produced some beneficial results for some children with this problem. Otherwise allowing the child to wear ear-phones, ear-plugs or just a beanie pulled down over his ears with or without cotton-wool pads to help filter out excess noise may help. Tone of voice is another aspect of language that many have problems interpreting correctly. Directing sarcasm towards or using intonation to form questions or to convey meaning in any other way that the literal meaning of the words is asking to be misunderstood by an autistic child. These aspects of language have to be explicitly taught – they aren’t automatically acquired through experience regardless of age.
THE NOSE: Sensitivity to perfumes or odours is also very common. Avoid using any highly perfumed household or personal products around the home or environment of an autistic child unless you determine first whether he likes the smell or not. If he likes the smell then use it but not if it is overpowering. Also check how your child reacts to the smell of chlorine-based products as opposed to Ammonia-based ones. If the child is sensitive to chlorine-based products then you may have to charcoal-filter your water supply as chlorine is regularly added to it to kill bacteria and algae and ingesting it; washing in it or wearing clothes washed in can induce digestive problems; skin problems (itching or rashes) or just problems from the odour of it (dry throat or just a general feeling of confusion which can bring on an Anxiety Attack).
THE SKIN: Tactile sensitivity is probably the reason that so many autistic children are regarded as ‘lacking emotional reciprocity’. However there are ways to touch even the most sensitive child without making the alarm bells ring. Never touch any autistic person without first announcing your intention. Touch firmly and slowly – bear hugs are good; quick cuddles are not – but never do the touching if you are not calm emotionally yourself or feeling well. Like lie-detectors, the sensitive skin of an autistic child can detect your emotional state but confusion can result in not knowing the cause of the tension in you that he is feeling so it is likely he will unconsciously assume that it’s to do with your feelings towards him.
Autistics usually have an exceptionally high pain threshold for serious injury and lack of a patella reflex is common. Frequent burns, scalds, bruising (autistic tends to bruise very easily) or other types of injuries can occur without knowing how it happened. However, skin scrapes, small cuts or kicking a toe – trivial assaults on the body are exceptionally painful. Whereas traumatic assaults such as broken bones, spinal injuries or life-threatening injuries such as appendicitis or internal haemorrhage can be overlooked even by experienced specialists because their reaction to the pain is so completely different to what is expected for such injuries.
THE MOUTH: Sensitivity of the taste buds and mouth area can produce very finicky eaters and lead to lifelong eating problems. If there is a particular food that the child doesn’t like then it’s possible it may not be solely do to taste or refusal to try something new. It could of course be due to both these things but texture; colour or temperature can also play a part. Autistic people usually prefer savoury to sweet foods and fresh food to cooked. My daughter is evidence that an autistic child can grow up healthy and strong without eating any cooked vegetable apart from potato which has only been fried, baked or boiled but not mashed. She will however eat a few raw vegetables and eats lots of fruit. Her favourite fruits are tomato, bananas and apples. Her favourite cooked meals are anything with pasta or rice or heavily laden with cheese. Helen’s favourite choice of foods is fairly typical for an autistic person.
Autistics tend to require a greater liquid intake than others do and caffeine-based drinks are the usual choice. The autistic nervous system is very sensitive to most drugs and most reactions to them are counter-indicative. Caffeine for instance has a calming effect on autistics rather than being a stimulant as most people appear to experience it to be…. which is the primary reason that most of us drink lots of it whether in the form of coffee, tea or Coca-Cola. No drug should therefore be initially administered in the full dose generally prescribed and psychotropic medications should never be given. If trying a new drug for the first time start with an extremely low dose and then increase the amount over time until either a beneficial or deleterious effect is observed. Never assume that if a little is good then more will be better or work quicker. It is generally far from being the case!
My mother administered Vitamin B6 and Epsom Salt baths to me as a child whenever I became agitated or distraught and I have used them regularly with my own children. It, therefore, came as no surprise when I discovered that others have received similar benefit from them or that some researchers were recommending them as stress-reducing agents. I also use aspirin to relieve stress but the quickest way to reduce it is by crying so encouraging even male autistic children to ‘cry out their problems’ is recommended.
I also supplement our diets with Vitamins A and D and use Calamine Lotion for skin irritations. Apart from a few short-term medications prescribed by the doctor for specific illnesses, this is the only ‘medical intervention’ that any of my children have ever received.
Many children also exhibit food intolerances. In my own family foods rich in Vitamins C or E can only be ingested in extremely small quantities otherwise severe stomach cramps and/or vomiting and diarrhoea result and the effects last for days. Many parents have discovered that their children are gluten and/or casein intolerant, so in those cases a gluten and casein free diet is recommended. While it doesn’t appear to be aggravated in my family, I still endeavour to keep consumption of these products within moderate levels so as not to promote sensitivities to these foods. Making sure that from an early age that the child has a diet that is well balanced is very important but often difficult if he’s a finicky eater.
An autistic person must live according to the motto “Everything in moderation”.
THE EMOTIONS: It’s generally considered that autistics ‘lack empathy’. This isn’t true. Autistics are very empathic – in fact too often they are too overwhelmed empathically to be able to express it. Autistics are so tuned in to the emotional states of others that their ‘lie-detector apparatus’ can work even without physical contact…proximity is all that is necessary. They share the feelings of others they just don’t have the words because they can’t interpret an emotion they’ve never experienced inside themselves. So they will either be so overwhelmed by those feelings they are picking up from others that their emotions go into ‘shutdown’ or appear disinterested by trying to change the subject to alleviate the emotional pressure they experience.
There are usually some emotional states that are exhibited by others that Aut istics don’t understand because they don’t have personal experience of them. Many have emotional responses that are limited to FEAR (the emotion that will govern our lives if not brought under personal control) and LOVE (spiritual celebration of joy for all creation). The other emotional reactions they display are just aspects of or responses to the feelings these two basic emotions evoke in them. FEAR gives rise to ANGER or PANIC and LOVE to a CALM PEACEFUL STATE or EXCITEMENT. This is why the emotional states of others can be so confusing and the responses to expressions of sympathy, greed, jealousy, praise, etc. are often considered inappropriate. With experience and education an understanding of the more subtle emotional states of others can be achieved but this is the root of the problem in trying to interpret the facial expressions of others. For instance to an autistic ‘sad’ looks like ‘angry’ and ‘frustrated’ can look like ‘happy’ because of the ‘grimaced smile’.
THE ENVIRONMENT: Many autistics are sensitive to external conditions. Of these the most problematic is TEMPERATURE. A typical summer day is usually too hot to permit any physical exercise and autistics tend perspire profusely at lower temperatures than others do. This is why the need for frequent fluid intake especially in warm weather as autistics are prone to dehydration, sun stroke and heat exhaustion as soon as the thermometer creeps only a fraction above normal body temperature.
One of the causes of disturbed sleep is over-heating and children will often discard all their bedcovers even in the middle of winter and then wake up because they are too cold. Some of the adults have solved this by sleeping with their feet out of the end of the bedcovers but keeping the remainder of their bodies covered.
Autistics can often be seen wearing summer clothes in winter – cold is not experienced while the body is active – and woollen or long-sleeved garments in summer – worn for insulation when body temperature is lower than air temperature and protection from the sun ray’s on their skin.
The one thing that all of these have in common is that they induce an exaggerated state of STRESS in the autistic individual and it is this STRESS that evokes the majority of the observable, characteristic autistic behaviours. Autistic individuals are extremely sensitive to elevated stress levels and even a weak stimulus or multiple weak stimuli of different kinds can accumulate to produce dramatic effects if the individual is not removed from exposure to them.
It is these stress-induced behaviours which most resemble those of ADHD. My claim of ADHD and Autism being polar opposites is that not having the mechanisms to control impulsive or aggressive behaviours is equivalent to having excessive, sensitive controls but having them rendered inoperable under certain conditions which is what I believe happens during a ‘meltdown’.
If there are no apparent external stimuli present then suspect physical illness or fear as the internal stimulus. Fear is often evoked when the child is frustrated, tired or confused with many children experiencing ‘night terrors’ for this reason.
Also be aware that there is often a considerable amount of time that elapses between the stress-inducing event and the emergence of the stress reaction which often makes it difficult to isolate the cause. Keep a record of events that happen not only immediately before the episode but earlier in the day as well. This may help to isolate what is causing the PANIC or ANXIETY ATTACK.
Some autistic children are so ‘highly strung’ that they exist almost constantly in a state of ANXIETY and these present the most difficult problems for anyone trying to help such a child and often medication is the only thing that will help.
ITS RELATIONSHIP TO OTHER CONDITIONS:
There are a number of conditions that seem to be common in families that have at least one autistic child. Other language disorders; learning difficulties; ADHD; Bipolar Disorder; Coeliac Disease and any of the Auto-Immune Diseases such as CFS; Multiple Sclerosis and Hashimoto’s Disease seem to be the most common of these.
In addition other disorders can be co-morbid with the child’s autistic disorder. There seems no reason to suspect that any other disorder that affects the general population is excluded from co-morbidity with Autism. However some conditions more commonly occur with Autism than others. In this group are Fragile X Syndrome; Landau-Kleffner Syndrome, William’s Syndrome; Tourette’s Syndrome; Bi-Polar Disorder; Tuberous Sclerosis, Neurofibromatosis, Hypothyroidism but probably the most common is Epilepsy. However the fact that few of these are ever diagnosed in an AS child could possibly indicate that the more severe forms of Autism may have a greater connection to the existence of a co-morbid condition rather than being a real expression of what Autism is…meaning that HFA/AS is the ‘true’ form of the condition which is what both Kanner and Asperger originally claimed.
HOW IT CAN BE DISTINGUISHED FROM OTHER CONDITIONS:
Autism can be distinguished most easily from other disorders – especially ADHD – when the child is relatively stress-free and relaxed. It is only then that the ‘true-face’ of autism can be seen.
The stress-free autistic child:
Is a happy and well-behaved child.
Obeys all the rules to the letter.
Is a deep thinker.
Is hypercritical of his own behaviour. Automatically will assume that anything that goes wrong is his fault.
Doesn’t deliberately lie, but may appear to lie by not understanding the relationship between cause and effect or by voicing what he wished had happened instead of what actually did happen.
Will not deliberately harm others. If he accidentally causes harm then he will experience intense remorse for a long time after the event although often doesn’t show this response immediately. Even harm caused during panic or anxiety attacks will be regretted or produce conflict as the child struggles with the concept of who was to blame.
If he causes harm or injury or recognises that he has done the wrong thing, then he will expect to be punished. If others won’t punish him then he will punish himself often resulting in self-injurious behaviours.
Has a natural wit and humour beyond his/her years.
Is intensely curious and eager to learn.
Requires almost constant mental stimulation broken only by bouts of intense physical exercise to help calm the mind and release the mental energy when overly mentally stimulated by new knowledge or ideas. Intense physical exercise can also help to reduce stress of other occasions.
If he doesn’t have an interest to occupy his mind, this mental energy can be converted quickly into mischievous acts. A mischievous twinkle in his eye will signal that he is either about to something or has just done it.
Is a willing helper but needs to be specifically asked to help.
Is very independent from an early age.
Is very caring and protective of all life forms.
Has only a literal interpretation of language.
Has limited understanding of the social use of language or the pragmatic aspects of language.
Has only one way of talking to others and speaks to and treats everyone the same. This is often interpreted as being rude or cheeky.
Needs a well-structured and predictable environment to avoid the fear-response.
Has extensive fine-motor difficulties which makes holding and controlling a pencil extremely difficult.
Is a night owl – preferring to sleep during the day especially if photophobic.
May exhibit abnormal fear-responses to every day objects or people.
May exhibit obsessive-compulsive behaviours.
May collect unusual objects.
Likes to order and sort objects and facts. Plays with toys by lining them up or sorting them into categories.
May be slow to develop self-help skills.
May have difficulty initiating any new activity unless he knows precisely what is required or has a model to follow.
Likes people and enjoys the companionship of others but only for short periods. Has no constant need to be around others and tends to prefer his/her own thoughts and interests for company.
Is an observer rather than a participant in most social or sports activities. May like to participate but fears rejection from past experience.
Constantly analysing input from the environment trying to make sense out of his/her observations whether of others or his/her own reactions.
Shows no fear or panic in dangerous or traumatic situations where these would be expected.
Perseverates or fixates on topics or objects he finds interesting.
Has difficulty switching attention so may be slow to respond or fail to hear correctly any verbal requests when his concentration is monopolised by an object or topic.
Has poor short-term memory retention or recall but excellent long-term memory skills although long-term memory recall may lack a temporal component.
Regularly talks aloud to himself unaware that he is vocalising his thoughts or to assist him to think through a problem.
Is non-competitive. If involved in sport it is usually an individual event where his focus is on improving his own performance rather than competing.
Is highly original and creative in his thought processes.
That I am not alone in my assessment of AS people is supported by Tony Attwood and Carol Gray in their recent paper “The Discovery of Aspie Criteria”, http://www.tonyattwood.com . This paper lists the qualities they have observed in AS adults and are based on the same behavioural criteria currently used to define the condition in adults but viewed from a different perspective – and assessment based on their ‘positive’ attributes rather than their ‘negative’ ones.
THE GROWTH PHASES OF THE AS INDIVIDUAL:
The majority of diagnoses of autism are given between the ages of 2 and 6 – an extremely difficult age for most parents to deal with – but no ordinary parent expects the tantruming 2 year old; the mischievous 3 year old; the curious 4 year old; the bored 5 year old or the depressed or arrogant 6 year old to remain that way all their lives. These are just seen as phases that every child must pass through and if these phases are absent in the child’s developmental progress then the parents should be very concerned. However, when these phases occur in the autistic child they are immediately blamed on the ‘autism’ and not recognised as the natural growth phases that they are – growth phases that need to happen and allowed to run their course and not be stopped short. It should also be expected that in an autistic child these phases may be exaggerated; of longer duration or occur later than would be considered ‘normal’. That IS what ‘developmental delays’ mean!
While the insomnia or disturbed sleep patterns; finicky eating habits; annoying behaviours; vacillating moods and rages of autistic child are difficult to deal with they are mild in comparison with what is yet to come. I don’t wish to frighten parents of AS children but for me the most difficult phase was puberty. The teenage years of their children are usually by far the worst for any parent. But what makes it particularly hard on the parents of an autistic child is that by this age the only place autistic teenagers feel secure and safe enough to vent their emotions or exercise their control is in their own homes. Possibly the only consolation that parents have when the ‘hormones come out to play’ is in knowing that autistic teenagers take most of their angst out on the person they are most strongly emotionally attached to…and in the majority of families that’s MUM!
If you’re lucky and puberty occurs within the ‘normal’ range then despite the intensity of the hormonal episodes you should not get to the stage of considering having your child charged with ‘parental abuse’. But if you’re not and the behaviour stretches into the child’s 20’s then your only recourse for self-preservation may be to make alternate living arrangements for your child before both of you wind up in some type of institution. Usually in their mid to late twenties at the very latest you will be able to welcome your child back into your home and cohabit peacefully once more provided neither of you holds any grudges but it is rare for a higher-functioning autistic adult to want to return to the family once he has discovered the joy of being in control of his own life. This also happens with lower-functioning adults who are placed in group homes and they can become very depressed if required to return to a situation where they are ‘treated like a child again’.
WHAT IS IT LIKE BEING AN AS INDIVIDUAL?
Having an Autistic Spectrum Condition is no better or worse than being born ‘normal’ or ‘neurologically typical – NT for short’ since ‘normal’ is not a term that has ever been well defined and certainly isn’t as well defined as any of the conditions that are considered to be ‘abnormal’. The other problem I have with it is that it is rarely applied in an objective manner…the person using the term generally uses it in a way that includes all his own behaviours. Yet by the definition of intelligence anyone with an IQ above average is not NT so I and my peers do not regard NT as equalling ‘non-autistic’ instead we have 4 categories NT, NDA, AC and AADH – I will tell you that NDA means ‘not diagnosed with anything’; AC is ‘autistics and cousins’ – a ‘cousin’ being anyone with some other non-typical neurological condition, but it’s for the best if I don’t divulge publicly what the last acronym stands for.
THE GROWTH PHASES OF BEING THE PARENT OF AN AS INDIVIDUAL:
When parents receive the diagnosis of Autism the most common reactions are:
GRIEF. Intense grief for the ‘imaginary child’ they always thought they would have.
GUILT. What did they do that caused their child’s autism?
ANGER. Who or what caused their child’s autism? Who can they blame?
FRANTIC SEARCH FOR INFORMATION. To see whom they can blame.
ANGER. Directed at whoever they consider is to blame.
FRUSTRATION. At lack of services. Why won’t people help me?
GRIEF. Revisited. What will become of my child?
GUILT. Revisited. I’m not doing enough to help my child?
FRANTIC SEARCH FOR TREATMENTS. Looking for a cure.
DEPRESSION. I’m useless. I can’t find a cure.
REAPPRAISAL. Look at that child. Is he so different?
ACCEPTANCE. OK, let’s ignore the rest of society and work on this ourselves. My child is a great kid – he just needs more love, understanding and help with those things he has problems with.
THE MOTHER FROM HELL. If you don’t give my child the services he needs or you criticise my parenting skills you have declared WAR between us and I will fight you to the death. Otherwise if you work with me on this and try to help my child I will hold you in high-esteem and remain your loyal friend, cooperative and appreciative of your efforts for the rest of my life.
WHAT IS IT LIKE LIVING WITH AN AS INDIVIDUAL?
It’s a roller coaster ride of emotional highs and lows but life is never boring.
WHAT IS THE PROGNOSIS FOR AS INDIVIDUALS?
In adulthood, many lead extremely pr oductive lives, living independently, working effectively at a job (many are college professors, computer programmers, dentists, librarians or some other field which may be related to one of the subjects he obsessed on as a child), and raising a family. So for the majority of AS individuals the prognosis is good provided they get the assistance they need to develop coping strategies that will allow them to complete their education although most will still need help in obtaining suitable employment with an understanding employer in a compatible working environment. With the ever-increasing importance on having ‘good people skills’ to survive the job interview process even though the position being applied for doesn’t require them it has become increasingly difficult for AS individuals to make a strong enough impression on any employer to secure a particular job – the position usually going to someone else with these skills although lacking the qualities that would make the AS individual a wiser choice.
WHAT CAN BE DONE TO HELP AN AS INDIVIDUAL?
While there is currently no prescribed treatment regimen for individuals with Asperger’s syndrome, there are a number of educational intervention programs that may benefit the child but the program must be specifically selected or designed as most appropriate for that particular child based on his strengths and weaknesses and not merely assigned on the basis of his label.
The Autism Society of America advises its members “Do not take the diagnosis of Asperger Syndrome for granted – ask for details and for the individualized profile of your child; do not accept a discussion of your child’s profile that does not include strengths that may be utilized in the intervention program; and do not accept an intervention program that is based solely on the diagnosis – ask for the development of an appropriate program on the basis of your child’s profile, his/her educational setting or living conditions, and realistic short-term and long-term goals.”
There is no such animal as the ‘normal child’ every child is unique and has their own peculiar set of strengths and weaknesses. In the ideal educational setting these would be able to be addressed individually so that all children would receive maximum benefit from their education but unfortunately most children miss out on any individualised treatment particularly in the area of ‘how to be a nicer, more sincere human being’. Our children are fortunate in that they have a label that will see them receive the help that they need provided we, as parents, continue to make sure that their educational needs are being met.
THINGS PARENTS AND OTHERS SHOULD KNOW?
Never assume the child is not listening when discussing anything in his presence. Even when he seems to be totally absorbed in his own activities his senses are recording and storing all input for processing at a later time. Instead assume that whatever he hears or sees he will repeat at the most embarrassing moment for you.
Your personal embarrassment is nothing though in comparison to the harm that can be done to the child’s self-esteem if he overhears you discussing his ‘behavioural problems’.
When praising the child use words that appeal to the qualities he admires within himself. ‘Logical, clever, creative, caring’ usually work but ‘nice’ or ‘good’ on their own don’t as they usually aren’t specific enough to identify the quality in him or his work that you are praising so are frequently open to misinterpretation.
Many of the ideas I have presented tonight are not mine alone. Much of the credit must go to the members of my list, PAN-L, who over the last 6 years have provided emotional support and practical information to anyone who needs it. But have also been there for each other to share the good times as well.
One of the most highly prized members of my list is Wendy Murphy the mother of a lower-functioning autistic 13 year old who lives in Denver, Colarado and has had more than her fair share of problems over the years. But even during the toughest of times Wendy is always in forefront offering excellent advice containing wisdom that belies her years and has the uncanny knack of anticipating the advice that members are going to need. Such an instance happened yesterday when I was trying to find the words to summarise what I have been saying here tonight. On checking my email I found these words from her addressed to another member of the list which I think contains the message I have been trying to convey:
“You can’t just tell an autistic person “wait”. They don’t know how to wait.
They don’t know what’s expected, what to do with themselves. They have to fill
it up with something. This causes them tremendous anxiety. I find, in about
half the cases of behavior problems, the core problem is that the autistic
person feels awkward about not knowing what to do. Unstructured time can be
tremendously stressful. Yet we take it for granted that kids will find
something to do without any instruction. When you’re autistic,it’s harder to
figure out what’s okay, and it’s frightening and wounding to make a mistake.
It’s a paralyzing situation.”
WHERE TO GO FOR MORE INFORMATION?
One of the best sources for information I know is the Internet. From professional articles to anecdotal evidence based on the personal experience of parents and autistic individuals, almost anything you need is available either on a webpage somewhere or by posing a question on one of the mailing lists. Someone in the world will have information that will help you find the answer to your question. If you have Internet access then go to http://lists.apana.org and follow the links to my autism mailing lists homepages. On the Autism List’s Links page you will find links to other Autism or Asperger’s sites and mailing lists.
For those who don’t have Internet access, Mary Jane Blackman in Brisbane operates a phone or mail order bookstore, which specialises in Autism-related b ooks and provided she has the book in stock delivery is quicker than trying to g et these books through any regular bookstore. She also will send you a catalogue of the books available although I have a copy of her current catalogue so you are welcome to view that when we finish. Mary Jane also has her catalogue displayed online at her website http://www.bookinhand.com.au/ and books made be ordered by email. I ordered two books from her late on a Sunday night and they arrived at my place at 9.30am Tuesday morning. Mary Jane’s daughter, Lucy has recently published her own book and although I haven’t read it as yet, I’ve read many good reviews of it from parents who have. She also has copies of Josie Santomauro’s recent publications which also are receiving good reviews and she still has stock of the 5th impression of Tony Attwood’s – a book that is so popular it has had 5 printing reruns since it first appeared late in 1998. Both Mary Jane and Josie are members of my OzAutism list as is Tony Attwood although we hear little from him these days.
I hope this has provided you with most of what you wanted to know when you came here tonight. There is much, much more I could tell you but for tonight I think this will suffice. So if anyone has any questions, I will endeavour to answer those now