World Autism Awareness Day 2015: interview with Prof. Michael Fitzgerald on autism, symptoms, diagnosis and treatments
2nd April 2015
April 2nd marks World Autism Awareness Day. Every year on this date organisations, institutions, communities as well as people interested in raising awareness on autism celebrate the day with unique activities and awareness raising events.
On our part, we are pleased to contribute to raising autism awareness by publishing an interview with our editor Michael Fitzgerald, Professor of Child and Adolescent Psychiatry at the University of Dublin, Trinity College, Ireland. Author of a large number of peer-reviewed publications and 25 books, he has edited 3 IntechOpen books on the subject of autism, Recent Advances in Autism Spectrum Disorders - Volume I, and Recent Advances in Autism Spectrum Disorders - Volume II, both published by IntechOpen in 2013, and the most recent one titled Autism Spectrum Disorder - Recent Advances, published online today.
Here is what Prof. Fitzegerald had to say about autism in general, symptoms, diagnosis and treatments when talking to us.
On Autism diagnosis and the effect on people.
While the classic severe Autism is not difficult to diagnose by the autism specialists, persons with Autism and Aspergers Syndrome, which is called the autism spectrum of mild severity, are very commonly missed even by structured interviews. 'Real' Autism today means the broader autism phenotype/category which means milder problems with reading non-verbal behaviour, that is reading faces, reduced eye contact, problems social know-how, naive and immature, problems sharing thoughts, problems turn taking, speaking with the high-pitched tone of voice, repetitive language, being routine bound, that is, preservation of sameness, narrow interests and sensory issues. The sensory issues, for example, noise etc and to complicate matters further, variation is the norm and there is much overlap of other conditions with Autism, including Attention Deficit Hyperactivity Disorder, Oppositional Defiant Disorder, Obsessive-Compulsive Problems and indeed sometimes Schizophrenia and Bipolar Disorder. If the correct diagnosis is not given, then these people will be deprived of treatment throughout their life and will be at increased vulnerability for depression, anxiety, suicidal thoughts and suicidal behaviour, which are common anyhow in persons with ASD. Persons with ASD, they often feel different from people without it and they feel lonely, they feel "got at" by other people and often feel attacked because they have difficulties reading other people's minds and seeing things from other people's perspective. It's hardly surprising they have suicidal thoughts etc.
How often do we come across persons with autism diagnosis?
There is great variation in the prevalence of Autism because people use different diagnostic criteria. When I began making these diagnoses in 1973, the rate was 4 persons per 10,000. Now, it is close, in some countries to 2.5%. I believe that 2% of the population gives you a reasonable prevalence now of the broader autism phenotype. So-called classic "Kanner" autism will be less prevalent. The reason for the increase in the prevalence is the broadening of the diagnostic criteria. The correct diagnosis undoubtedly from a genetic and clinical point of view is the broader autism phenotype and the higher prevalence's now being given from countries are, in my experience the correct prevalence's. It is no longer an extremely rare disorder. Most people now know some family with a person with Autism or Aspergers Syndrome which would not have been so in the past. In terms of Aspergers Syndrome, this has been deleted from the American Psychiatric Association specification DSM V. In my view, this has been unfortunate, because many thousands of people throughout the world have this diagnosis, have accepted and understand it and now to tell them that this diagnosis no longer exists and that they must call themselves persons with Autism, I believe is unempathic. I do accept from a Scientifics perspective, they are all on the autistic spectrum. Autism is now common in all mental health outpatient settings but is often missed. Sadly in the past, it was said to be caused by the so-called, 'refrigerator mother'. This is entirely false as autism has a heritability of about 93% and does run in families genetically by and large.
What exactly is autism? How can we define it?
I have dealt with the diagnostic issue already under question one but it classically is associated with poor eye contact, problems reading non-verbal behaviour, problems social know-how, problems social cop-on, problems sharing, problems turn taking, high-pitched tone of voice or monotonous tone of voice, repetitive language, preservation of sameness, narrow interests and as small children running around in circles, running up and down straight lines, spinning their body, flapping their hands, being preoccupied with washing machines spinning or tops spinning as well as being very distressed by sensory overload, for example, noise etc. Some have very high pain thresholds and others have very low pain thresholds. These would be the typical symptoms, which of course, can vary from mild to severe in terms of severity. They also can vary from very high IQ to very low IQ. It can be commonly associated with various medical conditions like tuberous sclerosis.
Two children, given the same type of diagnosis, may behave very differently?
One of the reasons for this variation is because of differences in IQ development, language development and co-morbidities like ADHD and Oppositional Defiant Disorder. Multiple diagnosis, by that I mean, Autism plus co-morbidities is extremely common and these will include Anxiety and Depression, indeed both.
How do we define treatment?
There are no miracle treatments for Autism, although these are often offered on the internet. It is very critical that parents are not taken in by these so-called "miracle" or "pseudo" treatments. Parents have to ask the question about a treatment that is offered like, is there a random controlled trial for any particular treatment, by that I mean, have the persons who have received this treatment, had accurate diagnosis, being randomly assigned to different treatments and have had short and long-term follow-up using reliable measures. These are usually the characteristics of legitimate treatments. While the concept of cure, is not a helpful one, in discussing the outcome of autism, nevertheless great progress can be made in terms of outcome and the best outcomes are where you have early intervention. This means early diagnosis, before the age of two, if possible, giving the best outcome. The treatments focus on helping the child develop social skills by that I mean, helping them to read other people's minds, to understand that other people are thinking and feeling from observing their eyes and their faces etc. It is critical to help them understand things from other children's perspective. Behavioural and modelling treatments will play a part. It is often very helpful to use a visual strategies as persons with autism tend to be strong in this area and an example is the, Picture Exchange Program, for non-verbal children where they have to point to a picture if they want some service are other. Communication skills therapy is critical in all persons on the spectrum both mild and severe and of course Autism and Aspergers Syndrome are communication skills disorders, therefore Pragmatic Language Therapy, including other forms of therapies for more severely affected persons with autism are of critical importance. Occupational therapy is important for those with sensory or motor problems, for example clumsiness. High-quality early education is also important. For those that are depressed, sometimes anti-depressants are necessary, here we are talking about medications that are licensed generally from age 18 upwards, but are used earlier than that, in an unlicensed fashion. For extremely severe challenging oppositional behaviour sometimes medications like Risperidone are necessary. Sometimes the fatty acids like Morepha-eyeq can supplement other interventions. Dietary interventions are more controversial and the science is somewhat equivocal about them. As an anecdotal level, some children are helped by gluten and casein free diets.
What is the difference between Autism and Aspergers Syndrome?
At the moment from the American Psychiatric Association DSM V, point of view, there is no difference in the sense that all of these are placed on the autism spectrum category. Paradoxically Aspergers Syndrome was first discovered before Kanner, by Hans Asperger during his studies from 1934 onwards, in Austria. He used the diagnostic phase, autistic psychopathy, to describe these persons which Lorna Wing later called, in 1981, Aspergers Syndrome. In the current book, I have brought back the phrase autistic psychopathy in terms of criminal autistic psychopathy, to describe persons with Aspergers Syndrome or milder forms of autism and criminality. Generally Aspergers Syndrome was seen as persons with, what were called "milder" forms of Autism, with good language and good IQ. In terms of the American Psychiatric Association, DSM IV, there had to be no cognitive or language development, but all the features of autism, to get a diagnosis of Aspergers Syndrome. Asperger Syndrome is also scheduled to be deleted from ICD XI. Luk Tsai did suggest that the difference between Autism and Aspergers Syndrome was that persons with Autism were not interested in making social contacts but that people with Aspergers Syndrome were interested in making social contact but lacked the skills to do so.
What kind of symptoms could alert a parent of the possibility that their child is affected by a form of Autism?
The commonest early feature that is seen of Autism are the speech and language problems and the communication skills problems. Parents will tell you, in the first year to year and a half of life, that the child maybe didn't want to be hugged, pulled away from them, didn't respond to their name being called, were often considered to be deaf and would have been very commonly assessed for deafness. Probably the two professionals that parents historically tended to take their child first were audiologists or a speech and language therapist. The social relationship problems are usually noticed earlier on and they are particularly noticed if there are other children in the family or if they attend preschool, where they are not interested in mixing with other children, may have temper tantrums a great deal, may be on the edge of the group and indeed may often be "expelled" from one or more preschool groups. It is critical that any mother who suspects a child of having autism, in the first two years, should go and get assessment and more and more parents are doing this and are going for assessment before the age of two. Unfortunately, there are often long waiting lists in assessment clinics and so this early period of intervention is missed. In my experience, mother's sense of their own child is about 95% accurate and mothers must be listened to very carefully. The commonest cause of misdiagnoses is ignoring what the parents state or the professional having limited experience of Autism or the professional using a structured inappropriate interview which misses many people on the autism spectrum. Therefore, third opinions are not necessary and not uncommon. We are aware now of neuro-plasticity and that nerve connections can be made by all the therapies that have already been described in this interview. Therefore early intervention is absolutely critical. There is no doubt that if a parent has the slightest concern that a child might have autism and the same would go for teachers etc, then the child should be referred to an experienced professional, knowledgeable in the autism area. People not knowledgeable in the autism area very commonly tell parents that the child is too young to be diagnosed or that they will grow out of it. These reassurances can be quite damaging to the child and inappropriate.
Is autism something that a person lives with through throughout his or her life?
Autism is generally a lifelong condition and certainly this is the best way to think about it, particularly in the early stages. This does not mean that a person with Autism can't lose many of their symptoms as they get good treatment and grow older. I have not observed, in the past 43 years, any people growing out of it completely but I have seen many people improve in a major way. Generally the best approach is to move forward hopefully. Of course, people with great ability and success in life often have Autism of the high functioning kind, for example, W.B. Yeats, Charles Darwin, General Ulysses, Ulysses Grant, Eamon DeValera (President of Ireland), Thomas Jefferson, Thomas Edison, Isaac Newton and Einstein. Persons with Autism can lead highly productive lives. It depends on severity and depends on the interventions and employment supports they have been given over the years.
In your opinion, how is autism perceived by today's society?
The knowledge about autism has increased very considerably over the past 20 years. It is still seen as a disability and there is still the issue of stigma which is more in some countries than in others. There is also an increasing awareness of the talents of people with Autism, for example, in Silicon Valley, California. It is becoming more a part of popular discourse.
What are the most recent medical developments, concerning Autism, you would think people should know about?
People should know about the very complex genetic underpinnings of Autism. They should know what the risks are of having a future child with autism, if they already have one. This requires genetic counselling and genetic testing, including a fragile X test etc. They should know that there are many neurobiological abnormalities in the brain which are currently not available as diagnostic tests. They should know that early intervention is critical and that there are no "miracle" cures. They should note that simple interventions like speech and language therapy, occupational therapy, mind reading skills therapy and behavioural interventions are critical from the earliest age of diagnosis. They should know that waiting lists are damaging for children with Autism both from the diagnostic point of view and from the intervention point of view.
What can be done to educate on the subject of Autism?
It is generally very important that families with children or adults with autism are members of local autism support groups. It is important to keep up-to-date with scientific developments and not to be sidetracked by so-called miracle cures. The interventions, in terms of, social know-how, social educational are not "rocket science" but can be done by every family, every teacher, every day to improve the outcome for persons with Autism. While most persons with autism are highly moral, a tiny group can be dangerous and it is important for the community that treats are taken seriously and that these persons are identified to prevent school shooting or other mass killings.
To read further on the subject of autism, feel free to read, share and download for free our following books on the subject:
- A Comprehensive Book on Autism Spectrum Disorders, edited by Mohammad-Reza Mohammadi, IntechOpen 2013
- Autism - A Neurodevelopmental Journey from Genes to Behaviour, edited by Valsamma Eapen, IntechOpen 2011
- Autism Spectrum Disorders: The Role of Genetics in Diagnosis and Treatment, edited by Stephen Deutsch, IntechOpen 2011
- Autism Spectrum Disorders - From Genes to Environment, edited by Tim Williams, IntechOpen 2011