This is a post I have been planning to do for some time, so I thought I would do it before April, Autism Awareness Month, closes out. The reasons for wanting to do this post are multiple. As a professional I have been trained in autism while doing a child psychiatry rotation, examined on it generally, and have treated the mother of an autistic child (moderate to severely affected), at the same time as I was treating a mother who seemed to wish that her daughter were an Asperger's type of autistic child, despite the reassurances of multiple specialized pediatricians.
Simultaneous to treating these 2 (in back to back sessions sometimes), my friends' youngest daughter then aged 2 was diagnosed as autistic (mild to moderate severity), after they had her assessed for delayed speech. I have lived with and supported both parents through all the phases of shock, disbelief, denial, acceptance, hope, disappointment, frustration with the resources available or not, including her recent introduction to a normal Grade 1 class, which was both challenging and heartbreaking. A family member who is a specialist in early primary education has been helpful to all of us in the Autism vs ADD features of Autism vs the spectrum of normal 6 year old, Grade 1 behaviour.
Over the course of the time I have been commenting on Saudi blogs, the topic of autism has come up a number of times in a number of places. Sometimes it is interjected into a discussion of Down's Syndrome (Trisomy 21) or other types of disabilities. Often the discussion turns to a lack of resources in Saudi, a lack of understanding and a lack of compassion for the disabled. I appreciate that all this may well be true, but I do believe based on experience and research that there are some resources and progress being made in these areas in Saudi (and other MENA countries) which is what I would like to focus on here. So I will briefly review what autism is, then discuss autism in Saudi Arabia, and include some elements from the April campaign internationally to increase awareness of and support for autism. Some of the photos are from the April 2, Light it up blue: Shine a light on autism campaign, and the Flickr photo set created from it.
Kingdom Holding Tower, Riyadh
Autism is a neurologically induced pervasive developmental delay in a child's growth and acquisition of milestones, most noticeably in speech acquisition and social relatedness. However, other functions and developmental milestones are compromised, and there are characteristic movement disorders (repetitive hand flapping, twirling, self harm) and play patterns (isolated, repetitious, unimaginative, using toys as objects eg to line up rather than as instruments of play), and rigidity about routines, including object placement, with a general resistance to change and new skill acquisition or environments. Disturbance in rituals, or exposure to phobias can result in "meltdowns" and tantrums that are uncharacteristic of a normal child of the same age. The psychiatric DSM IV TR criteria for Autism Spectrum Disorder are here. Asperger's Syndrome, a specific type of Autism characterized by high verbal functioning and high IQ but very poor interrelatedness and social skills, is defined there as well. More detailed descriptions and information on both are available on the National Institute of Mental Health website, here.
Note that Autism is on a spectrum, and a given child may have higher or lower functioning in one or many areas. The expansion of the diagnosis of Autism to that of a broader spectrum of pervasive developmental delays is the single biggest reason for the seemingly great increase in numbers of children being diagnosed with Autism. Increased training of family physicians, pediatricians and child psychiatrists has improved detection and diagnostic capacity for Autism.
Sadly, it seems that some parents and teachers are overzealous in their "diagnosis" of a child as having Asperger's. As with my patient, one gets the sense that the desire for children with a high IQ overrides the challenges and the undesirability of having a disorder that goes along with it.
CN Tower, Toronto, Canada
There are a number of controversies about the causes of autism and its treatment. One is the role of vaccination as a causative factor in autism. This stems unfortunately from a scientific study done in England which like many such studies came to tentative rather than definitive conclusions and which were subsequently disproved. In the mean time, the media, and certain advocates like Jenny McCarthy have held strongly to this belief, despite subsequent research evidence to the contrary, with the result that especially in England parents are withholding vaccinations, so the incidence of autism has not fallen but the incidences of measles, mumps, and rubella have risen in alarming numbers.
Another theory of causation is a genetic abnormality, or predisposition, which seems to be the case for a very small (epidemiologically speaking) minority, even though as yet the exact gene, genes, or genetic combinations have not been discovered, only explored. There is an increased risk of a second autistic child where there is already one in the family, and an increased risk for boys over girls. For most cases of autism, it simply still isn't known what causes the disorder. Thankfully, theories and research are now focused on neurological abnormalities rather than the older mother-blaming psychoanalytic theories.
Nicosia Town Hall, Nicosia, Cypress
Applied Behavioural Analysis, a very intensive form of early intervention behavioural therapy with autistic children is currently the treatment of choice for the autistic behaviours, and is combined with speech therapy for linguistic and social development. Diagnosis is often made age 2-3 when it is clear there is a speech and social delay, and intervention at this time for 15-20 hours per week has proven effective in maximizing abilities and improving functioning--not in curing the disorder, though. Usually the final prognosis is based on verbal capacity that the child has achieved at the age of 6. 6 is also the age at which insurance programs, including government ones, cut off funding for treatment, since the gains after that age are thought to be less significant.
Clinical management also includes treatment for concomitant problems, like attention deficit disorder, or any other psychiatric or neurological disorder. I know of one child who had both cerebral palsy and autism, and yet, due to funding issues, was denied a teacher's aid in the classroom--until the teacher and principal spent 4 months documenting and lobbying for one. The poor child was humiliating himself (by disrobing to go to the washroom then being unable to re-dress himself), was frustrated, yet was blessed with a good disposition, and a wonderful mother living close by, and who made herself readily available (teachers are not legally allowed to touch the child in the ways necessary to re-dress him).
Many children with autism seem to suffer gastric disorders which leads some to wonder about a causative connection, or at least the benefits of dietary changes. Again, diet can help with gastric symptoms, and to a certain extent with toileting issues.
Niagara Falls, lit blue by the Niagara Falls Parks Commission
As much as parents in the West complain about a lack of resources, cost, challenges with schooling, stigma, and a general lack of answers, cures, and solutions, those in non-Western countries do seem to face more challenges with resources generally, and, as with other mental disorders, greater stigma. On the other hand, family members are often more protected, less likely to be institutionalized, and larger families with closer extended family ties can provide a broader support system. As I learned with a Moroccan niece who suffered a never diagnosed neuro-degenerative disorder that left her blind, deaf, unable to adequately feed, and with no mobility, health care professionals, family, friends and neighbours in any culture can be wonderfully supportive and resourceful. It depends to some extent on the family, and on the location. Certainly, as anywhere, major centres are more likely to have both the expertise and the numbers of cases to warrant the creation of clinical and educational services.
A year ago, on World Autism Day 2009, Arab News published an article, Autistic society sounds SOS for special children, which describes well the challenges for autistic children and their parents in Saudi. These include a lack of autistic centres in major cities like Makkah and Madinah, few places available in the centres which do exist, in Jeddah and Riyadh, lack of government sponsored centres, and insufficient stipends for autistic children. Care and schooling are expensive, and often must be sought in other GCC countries or further abroad, or through private individual care, all at considerable expense to the parents.
Yet, in November of 2009, Ghadah Baaqui (MA, psychology, specialized in Autism) won the People’s Choice Award, part of the Youth Business International’s Entrepreneur of the Year competition, under the patronage of the Prince of Wales for the "Ghadah Madinah Autism Center" which she established in Madinah with the help of the Governor's wife, and the Saudi-based Centennial Fund inaugurated by King Abdullah in 2005.
As mentioned above, there is a Saudi Autistic Society in Jeddah, and supports through the Family Protection Society and King Abdulaziz University (KAU). The Jeddah Institute for Speech and Hearing does applied behavioral analysis (ABA). Also in Jeddah, at Effat College, educators from Oxford have helped to create programs on autism for psychology majors on the professional aspects, and for mothers on parenting skills for autistic children: Effat College Aims to Enhance Autism Programs. In Riyadh, King Khaled University Hospital of King Saud University (KSU) opened the first combined research and treatment centre in the Middle East, in late March 2010.
In Saudi Arabia, the Saudi Autistic Society is a main resource for those speaking Arabic, but seems to have little to offer non-Arabic speakers. This raises issues of access to care in any setting where one doesn't master the dominant language, and particularly access to teaching and support programs rather than strict medical care. This is a recurrent problem not only with expats but with new immigrants or foreign students who don't yet master the dominant language in any country. It can be a particular problem for those in a country on a relatively short contract, or for an unknown time period. Still, the site notably has information on ABA, and resources for parents like how to toilet training autistic children (a major issue for many); and, for professionals, a Journal of Autism Spectrum Disorders.
As described in this report from Applied Behavioral Analysis International, a major effort was made in October of 2003 to introduce ABA into the Middle East and particularly the GCC. The Psychiatric Division of the Dhahran Health Centre in Saudi Aramco was a major stop for training the personnel in autism and in ABA, although efforts there had already begun in 2002. Other main centres for training personnel were Doha, Qatar, and Manama, Bahrain. That training was in addition to the main focus, the Middle East Applied Behaviour Analysis Conference, held in Bahrain. It "was attended by approximately 100 doctors, teachers, professionals, and parents from Bahrain, Egypt, Jordan, Kuwait, Lebanon, Oman, Qatar, Saudi Arabia, the Sudan, and the United Arab Emirates".
While it is extremely important that local research and treatment facilities, as well as school programs, be developed in Saudi and in neighbouring GCC countries, the advantages of the internet include resources like those linked already, the one above on blogs on Autism, and those like the Autism Society of America.
I hope this brief introduction sheds some light on the challenges of autism which affects 6 in 1000 Saudi births, and some hope about research, treatment, education, and the supports available locally, nearby, and on the internet.
What experiences, if any have you had with autism?
What type of services are you aware of in your area?
What is your impression of the level of stigmatism against autistic children where you are, where you have travelled or lived?
What do you think are the greatest misconceptions about autism?
Were you aware before now that April is Autism Awareness month?
Was any building near you lit up blue during this month?
Any other comments, thoughts, experiences?