Educating the Health professionals: the challenge for parents.

This is a talk I delivered at the one day conference AUTISM: Challenging Issues; Continuing Ignorance, Thursday 14  June 2001 at Regent’s College London. There is very little I would change if I was to deliver this speech again. Most of the problems remain. Even though there has been a noticeable improvement in diagnosis, awareness and educational provision, parents still report the same frustrations that I experienced when raising my son. Autistic adults continue to be misunderstood and have their needs ignored.

One change I would make is to drop the term “co-morbid” when discussing many of the problems that occur alongside autism. There are congenital conditions that occur more commonly in autistic children than in the general population. But they only affect a minority of autistic children and the majority of children with these disorders are not autistic. I have moved away from a medical model of autism towards a model that explicitly embraces the ideas of autism acceptance and neurodiversity which I explore elsewhere in these pages.

Until I see sound scientific evidence to the contrary from independent researchers, I have no reason to believe that biomedical problems have a direct connection with autism, either as a cause or a consequence. They should still be taken seriously. Some clinicians still assume that distressed and challenging behaviour is an inevitable corollary of autism when similar behaviour in otherwise “normal” children would prompt further medical investigation and treatment. They are wrong to do so. On the other hand the autistic child may have atypical responses to illness or injury that disappear when the source of their distress is addressed. We should not take this to mean that our interventions are directly addressing their autism.

This whole area is the subject of public debate and scientific investigation. I merely note my changing viewpoint here. I expect it to continue to change in the light of further developmnets in our understanding of autism.

Introduction
The man approached the special needs teacher with a suggestion. Perhaps his son’s behaviour was caused by a form of autism called Asperger Syndrome. The teacher dismissed the idea. Matthew was nothing like the children with autism that he had taught. He did not flap or rock or engage in ritual behaviour. He was too interested in people, too engaged with the world to be autistic.

He conceded that Matthew was a seriously troubled child who ought to see a child psychiatrist. But was he autistic? No way! Needless to say, Matthew was subsequently diagnosed with ‘a form of autism that best fits the criteria for Asperger Syndrome.’

I find this story shocking. And it is not because the teacher was so wrong in his understanding of autism. Nor is it because of his rude and insensitive response to the man. I find this story shocking because the man was not even Matthew’s father. He was the schools medical officer. The teacher was talking about his own child. I am that teacher and Matthew is my son.

So I know how easy it is to get it wrong about autism. I have also learned that with a little effort it is so easy to get it right. When that happens everybody benefits; the professionals, the parents and, most important of all, the children.

Why Do We Get it Wrong?
Knowledge and understanding of autism has been transformed over the years. It has moved from being a narrowly defined condition (Kanner 1943) with a prevalence of 4.5 per 10000 (Lotter 1966) to a very pervasive developmental disorder which the National Autistic Society (NAS) today estimates has a possible prevalence of 91 per 10000. This figure is the subject of debate. (Fombonne 1997) But the number of cases is increasing. More parents are asking, “Could this be autism?” and often the answer is, “Yes.”

As well an increase in numbers we have seen a broadening of the definition of autism. In particular, the rediscovery of the work of Hans Asperger and the integration of his syndrome within the autistic spectrum (Frith 1991) means that clinicians now encounter patients with a very wide range of disabilities and abilities when diagnosing and treating autism.

Anyone who finished their training before the 1980s may be unaware of these changes. The well documented problems with diagnosis (Howlin and Moore 1997) suggest that many children and adults are presenting themselves to clinicians who are not properly equipped to deliver a diagnosis.

n my own case, when we finally got an appointment with the child psychiatrist, I was by now convinced that Matthew was autistic and had written my own report to support my position. Now it was the turn of the psychiatrist to question this diagnosis for Matthew because, “He was too interested in people, too engaged with the world to be autistic.” But she did not dismiss the idea out of hand, as I had done. She was not afraid to admit to her own uncertainties and lack of specialist knowledge. So she referred us on to a specialist diagnostic unit, The Centre for Social and Communication Disorders, run by the NAS who confirmed the diagnosis when he was 12, two years after it was first suggested to me by the schools medical officer.
It is very important for professionals to understand the strain on families seeking diagnosis. Our motives are called into question. We may even be accused of manufacturing our child’s symptoms. More often we are asked why we want to label our child.

Diagnosis is a signpost not a label. It should not stigmatise our children. Rather, it ought to end their isolation by pointing them towards appropriate services. Getting a diagnosis is so difficult that parents often invest it with great significance. We believe that the lack of effective intervention is a direct result of the missing diagnosis. Instead of a signpost we assume it is a passport.

So we go away to a centre of excellence and return clutching a diagnosis. Now they will have to listen to us and provide for our child! But our local providers were not equipped to make the diagnosis in the first place. They may even harbour some resentment because we have ‘gone over their heads.’ Yet they are supposed to read our bit of paper and be magically transformed into autism friendly cognoscenti able to deliver the services we need.

I remember a meeting with our local education authority shortly after we had received written confirmation of Matthew’s diagnosis. They tried to ignore the report from Elliot House. Why? Because they had no resources to implement its recommendations.

This goes to the heart of the question of diagnosis and helps to explain the plethora of alternatives we often have to wade through in order to have our children’s autism recognized. If there is no autistic provision what is the use of a signpost that points to nowhere?

There are effective educational interventions for autism. That is why the NAS builds schools not hospitals. But, if this sort of specialist autism friendly provision is beyond the means of most local education authorities (LEAs), what is the incentive for physicians to diagnose a condition they cannot cure, which describes an educational need that the local LEA cannot meet?

The Problem As I See It Is …

• A medical profession that is, with notable exceptions, ill-equipped to meet a growing need for diagnosis for a condition that is still widely misunderstood.
• An absence of agreed protocols for intervention that offers little incentive for physicians to enhance their knowledge and understanding of diagnostic procedures for autism.
• As a consequence there is continuing ignorance of autistic spectrum disorders among physicians who diagnose what they are trained to recognize and, crucially, who diagnose conditions for which there are proven treatments.

So What Happens Instead?
People are diagnosed on the basis of observed behaviours. And if they are not diagnosed with autism they are diagnosed with something else: Attention Deficit Disorder – Semantic Pragmatic Disorder – Dyslexia – Dysphasia – etc.

These at least might attract some helpful interventions from Speech, Occupational and Physical therapists. But what if our children are diagnosed with a psychiatric disorder such as Clinical Depression – Borderline Personality Disorder -Schizophrenia – Oppositional Defiance Disorder – Obsessive Compulsive Personality Disorder – Bi-Polar Disorder – etc?

It cannot be stressed too often that AUTISM IS NOT A MENTAL ILLNESS. It is true that the strain of being autistic in a world that is largely ignorant about and unsympathetic towards your problems leads to higher levels of anxiety, depression and suicide. But even if you have a mental illness as well, your autism may interfere with traditional methods of treatment like drugs, counselling and psychoanalysis. You may not respond to treatment, or your autistic condition may be aggravated by these inappropriate interventions. And if you seem to get worse you may even be sectioned under mental health legislation.

Even with a diagnosis of an autistic spectrum disorder, young people may fall foul of the mental health system if they encounter a psychiatrist who does not understand autism and attributes their behaviour to an organic mental illness instead of recognizing a legitimate autistic response to environmental pressure. Read the accounts by Wendy Lawson (2000) and Ed Schneider (1999) for a better of picture of what it is like to be autistic and misdiagnosed and hence mistreated for schizophrenia.

FIVE MAGIC WORDS
All too often I hear comments like;

“Our doctor has been reading up on autism and does not think our son meets the diagnostic criteria because he gives eye contact/smiles a lot/is too sociable/talks well/is interested in his surroundings.”

It also happens that parents take their child to see a range of practitioners who view the child through the narrow lens of their own speciality and the child gets a different diagnosis from each and a different course of therapy:

• Semantic Pragmatic Disorder from the speech and language therapist;
• Obsessive Compulsive Disorder from the child psychiatrist;
• Sensory Integration Disorder from the occupational therapist: etc.

The plain truth is that often these are all manifestations of the same autistic spectrum disorder and the child would benefit immensely from an integrated therapeutic package delivered by an integrated multi-disciplinary team.
You cannot diagnose autistic spectrum disorders from a checklist of symptoms or from reading a diagnostic manual. You need training in the use of diagnostic tools and experience of people with autism. A checklist can alert you to the possibility of autism. It cannot be used to eliminate autism. Currently the NAS is promoting the CHAT as a screening tool for toddlers who may be autistic and DISCO as a diagnostic tool. I recommend them both. But I recommend the training that goes with them even more.

Unless we can establish reliable physiological markers for autism we will continue to rely on behavioural criteria for diagnosis. While this state of affairs continues we would do well to remember that our criteria are largely descriptive rather than explanatory. They answer questions like, “Does he do this?” They ignore the five magic words,

 

“Why does he do that?”

This is probably the most important question we can ask ourselves in relation to an autistic person. And sometimes it is just as important to important to ask the autistic person themselves. I was confused about the difference between autistic rituals and obsessions and Obsessive Compulsive Disorder. Matthew has both so I asked him. He told me that his autistic behaviour is part of who he is and helps him to feel good. His OCD behaviour is intrusive and distressing and he wants to get rid of it.

People First and the Language of Disability
Just over a year ago I began a course on autism validated by Manchester Metropolitan University. It was made very clear to all of us that ‘People First’ was the rule. We taught children with autistic spectrum disorders NOT autistic children and could expect to be marked down if we referred to them as such in our essays.
Meanwhile, Clare Sainsbury quite rightly won the National Association for Special Educational Needs (NASEN) book of the year award for her book, A Martian in the Playground. (2000) In that book she describes her experience as an autistic person, not a person with autism. She is quite clear that autism is not a disabling adjunct to who she is. It is central to her personality and her sense of self. She identifies with other Aspies, another word I fought shy of until I read it in Liane Holliday Willey’s autobiography (1999). She sees merit in being autistic. She does not want to be cured. She wants to be understood. So I make a deliberate effort now to use the language that autistic people are comfortable with.

Misconceptions
I earlier alluded to a possible unwillingness amongst physicians to diagnose something they could not cure. My response to that is, “With autism, the more we understand the less there is to cure.” At a very general level there are a couple of misconceptions I would like to deal with now.

1. The Autistic Spectrum is not a continuum of one colour from mild to intense. It is a metaphor for the range of colours, all different and each capable of varying degrees of intensity. A person with Asperger Syndrome does not have mild autism. Their social impairment can make Asperger’s Syndrome just as difficult to cope with as more classical expressions of autistic disorder.
2. There is no single autistic personality type. I know introverts and extroverts. Some are happy with their self contained lives. Others keenly desire the social interaction they observe in others and are distressed by their sense of failure. One school told me. “Oh we know about Aspergers. We had a boy with Asperger’s last year. He was no trouble at all.” Matthew was different to the other boy. He was still autistic. They could not understand that and inadvertently did more harm than good.
3. Thomas McKean, in his capacity as a board member of the Autism Society of America was asked to address a rally. He asked his fellow aspies on the internet what he should say. ”Tell them, ‘We are not all Temple Grandin!’” was the most popular reply. Temple has taught us much about autism but it is too easy to read her books and assume that all autistic people share her learning and thinking style. Many do not.
4. Many autistic people are highly intelligent. But we should not expect to argue them out of their autism with appeals to logic. Indeed, they often find their point of view highly logical. We are the irrational, emotional ones. It does no good to argue that their problems would go away if only they could try to be less autistic.

Think About What We Teach and Why

How many therapeutic programmes start with eye contact? The Aspies I know hate eye contact. Some of them find it too intense. Some of them cannot look and listen at the same time. Others have to look away while they are speaking. We insist on eye contact to demonstrate attention. Why not just ask, “Are you listening to me?” And when you get eye contact do not be too quick to congratulate yourself. On an internet forum I read this advice from one aspie to another:

“If they insist on eye contact just look at their nose. They will never know the difference!”

Let us take another old favourite, stimming or self stimulatory behaviour. If autistics are self absorbed and amusing themselves with twirling and hand flapping and rocking how are we ever going to get their attention? We must stop the stims! Let us add ‘Quiet’ hands to ‘Good’ looking.

Now, quite apart from the fact that many autistic people enjoy stimming and find that it helps them to relax and calm down when we have wound them up, why are we so affronted by the idea of someone finding themselves such good company that they prefer their own self activity to interacting with us? Haven’t we all sometimes wished that others would go away and leave us to our own devices? Their deficit in social cognition allows autistic folk to act as if other people were not there. Is this so much worse than our behaviour when we act as if to say we want you to go away but lack the front to come out and say it?

I am also reminded of Dave Hewett’s words at a talk I was privileged to hear in Cumbria a few years ago. What should we do when faced with a client who preferred to flap a yellow plastic stimmy thing.

Do NOT to take the yellow plastic stimmy thing away!

He reminded us that the challenge to us as professionals with all the intelligence and humanity at our disposal was to make ourselves more interesting and attractive than that yellow plastic stimmy thing. We were not to invade his world. Rather we had to invite him into our world and make it as inviting and non-threatening as possible.
It is often the case that, rather than trying to normalize their behaviour, we would do better to teach autistic people that their normality is different to ours. Then, instead of telling them to change all the time because we are right and they are wrong, we could teach them strategies to understand us and make allowances for our behaviour.

A Positive Role for Health Professionals
I think this view of autism could be quite attractive to psychologists and psychiatrists working in the health service. Instead of seeking to pathologize the behaviour of autistic people they would be freed to celebrate the positive aspects of autism and share this with parents who naturally want to love and value their child despite their difficulties. There is a lot of discussion about the need to mourn the loss of your ‘normal’ child and your hopes and expectations for him while you adjust to having an ‘abnormal child’ after diagnosis. It may be that what we really mourn is the lost opportunity for celebration. Autism appears to have taken this away from us and from our child. As Matthew once said to me,

“I’m sorry, Dad. I wish I could have been the boy you never had.”

Take the autistic child. Restore his self esteem and teach him to take pride in himself. Educate his parents in the best ways to raise him and teach them coping strategies for the challenges he will present. Counsel the brothers and sisters and teach them how to draw strength rather than weakness from their autistic sibling. You may not have a cure. But there are ample opportunities for you to heal.

There is an important lesson here. When parents walk into the consultant’s office we are usually at the end of our tether after a long and exhausting run-around. You are healers. Your natural inclination is to offer reassurance and ease our pain. But everyone else has tried that already and it has not worked. We want answers but, more than that, we need and welcome honesty, as when our child psychiatrist had the courage to say, “I could be wrong,” and referred us on for diagnosis.

After we got a diagnosis our child psychiatrist changed. The replacement gave us our next important lesson. After listening to our tale of woe he told us that he wanted time to think. He did not have the answers to Matthew’s condition but we felt he was on our side and wanted to help. The greatest thing for us was that he listened and did not argue with us. He took us seriously and offered his support. Before that we had been in so many meetings with professionals in which we had to fight every inch of the way to get them to take us seriously.

Actually he could offer us very little, apart from medication for Matthew’s obsessive compulsive disorder. But we did have joint meetings with him and the clinical psychologist and her assistant. This provides another lesson. We got sick and tired of repeating ourselves every time we got a fresh referral. Here were professionals who talked to each other and listened to us together.

Our clinical psychologist assigned an assistant to work with Matthew on a regular basis. These have changed over the years often with gaps between replacements. We have seen the benefits from continuity of provision and the downside when Matthew has had to start afresh with a new therapist. It takes time to get to know a person with autism and for them to get to know you. When you accept one as part of your case load be sure you can make a long term commitment.

Hard Cases

But what about the nonverbal teenager, who is not toilet trained, who self injures and tantrums on a regular basis. Where is the joy in his life? There is joy. I teach children like that. They give me joy and do have joy in themselves. They also give joy to their parents as well as despair. Read Kate Rankin (1999) for an honest account of raising such a child.

There is also pain and heartache. But how much of this is directly attributable to their autism and how much to the baggage that goes with it? I have no idea whether or not the many medical problems like ear infections, sleep problems, leaky gut and food intolerances are cause or effect or just happen alongside autism.

The point here is that health service professionals have so much to offer these children and their families. There are a growing number of therapeutic interventions that can help a range of problems related to diet, sound sensitivities, tactile defensiveness etc. along with co-morbid conditions like obsessive compulsive disorder.

Parents would welcome agreed medical protocols to test for possible adverse reactions to gluten and casein, to measure yeast infections and check for levels of toxins. We would like to know if our child has a weakness in their immune system which counsels caution in relation to the normally benign vaccination programmes that are common in Europe and North America. We want to know if a metabolic disorder is aggravating our children’s Autism by causing an imbalance in their levels of vitamins and trace elements. Should we be restricting access to certain foods or using dietary supplements to boost vitamin deficiencies? Research in all these areas continues.

The results are not going to lead to a cure. But, if questions like these can be answered when a child is presented for diagnosis, relatively simple and inexpensive medical or therapeutic interventions may alleviate a lot of unnecessary suffering. If we can deal with their food intolerance or metabolic disorder or over sensitivity to environmental factors then the child with Autism is going to be more amenable to the educational interventions and therapies that are already available.

We look forward to the growth of multidisciplinary teams that can provide a total package of diagnosis and assessment as well as provision tailored to our children’s needs. This requires co-operation between different agencies responsible for health, education and welfare provision and is no easy thing to arrange. Still, it is a sore point with many parents that, while diagnosis is deemed a medical matter, intervention is mainly educational. We would like you both to talk to each other.

Provision

I have talked at length about diagnosis and the problems that arise when it is not forthcoming. In South Cumbria we have had a trial of a multi-disciplinary diagnostic team that is temporarily stalled. Part of the reason is the inter-agency rivalry that often bedevils schemes like this. But, in part, I return to my original argument that the problem with diagnosis is that there is no incentive to identify people with autism if you have no provision in place for them. One thing that drove our team forward was the need to identify families with pre-school autistic children for participation in trials of the Early Bird programme, which teaches parents strategies for raising their autistic child.
So, rather than expend interminable time and energy seeking to set up a diagnostic facility, why not concentrate instead on what parents and their children actually need? Because once the provision is in place the powers that be will have to find a way of allocating places and deciding who has an entitlement to provision. Children and their parents will be queuing up at the door and some one will have to choose. So you will get your diagnostic team out of administrative necessity. I will conclude with a summary of the provision that parents want for ourselves and for our children.

• Local teams for assessment and intervention.

Occupational therapy, physical therapy, speech therapy from autism aware professionals – we need it. Remember, the most positive outcomes for autistic children are associated with good language and communication skills.

• Medical Interventions

You can get aromatherapy and homeopathy on the NHS. Parents should be able to access testing for gluten/casein intolerance and other medical disorders associated with autism.

• Early Years

Parents need lots of guidance and support. The Early Bird scheme is tailor made to meet their needs. It is being piloted around the country. It needs to be part of the programme for every Child Development Unit.

• Family Support

Counselling for parents and advice/workshops for siblings are both vital. Autism affects families, not just individuals.

• Advice for Schools

Too often schools feel unable to make the accommodations our children need unless they have medical authority. They need permission to break the rules for our kids, especially when it comes to dealing with challenging behaviour or modifying the curriculum. Staff training is also a priority. There is a lot for health professionals to do within and alongside schools.

Our children’s future

The transition to adult services for children without additional learning difficulties or handicaps is fraught with difficulties. If school ends at 16 and adult social services do not kick in til 18 what is to be done with the able but challenging autistic adolescent? Where in the health service is the capacity to cope with the needs of young people who are not psychologically disordered but neurologically different? Just as education units for the emotionally and behaviourally disturbed youngsters are a disaster for our kids, so psychiatric wards, clinics and day centres are totally inappropriate. The transition to adult services and continuing support for autistic people throughout their adult lives is a challenge that you have yet to meet.

The Hardest Question

Parents are still the main carers for their adult offspring. But we cannot always be there. When my son stands at my grave side, where does he go and who does he go with after my funeral? I need to know and so does he.

References

Fombonne, E. (1997) ‘Prevalence of Autistic Spectrum Disorder in the UK.’ Autism, the International Journal of Research and Practice. 1, pp 227-229

Frith, U. (ed) (1991) Autism and Asperger Syndrome. Cambridge University Press

Howlin. P and Moore, A. (1997) ‘Diagnosis in Autism.’ Autism, the International Journal of Research and Practice. 1, pp 135-162

Kanner, L. (1943) ‘Autistic Disturbances of Affective Contact.’ Nervous Child 2, pp 217 – 250

Lawson, W. (2000) Life Behind Glass: A Personal Account of Autistic Spectrum Disorder. London Jessica Kingsley Publishers.

Lotter, V. (1966) ‘Epidemiology of autistic conditions in young children, I. Prevalence.’ Social Psychiatry, 1, pp 124-137

Rankin, K. (2000) Growing Up Severely Autistic: They Call Me Gabriel. London Jessica Kingsley Publishers.

Schneider, E. (1999) Discovering My Autism: Apologia Pro Vita Sua (with Apologies to Cardinal Newman). London Jessica Kingsley Publishers.

Sainsbury, C. (2000) A Martian in the Playground. Bristol Lucky Duck Publishing.

Willey, L.H. (1999) Pretending to be Normal: living with Asperger’s Syndrome. London Jessica Kingsley Publishers.