Understanding Autism |27 April 2018

‘If you know one person with autism, you know one person with autism’

April is Autism Awareness & Acceptance month and in an attempt to further educate the public about autism, Catriona Monthy, a registered educational psychologist with the Health Professionals Council in Seychelles shares her knowledge, experience and advice.

Q: What can you tell us about the work you do and your involvement with children with autism? 

A: I work in student welfare, psychological and special education services in the department of early childhood, primary and secondary education. I work with primary and secondary school children who have a range of needs and challenges, including difficulties with learning and development relating to academic skills, daily living skills and social-emotional functioning.

My main role is to conduct comprehensive assessments of the children referred to me, within their contexts, and to work with the children themselves, parents, teachers and other partners, to support their learning and development. This includes children with autism.

I am a member of the National Committee for Autism, which was set up at the end of 2017 and a member of the multidisciplinary team that does diagnostic assessments for Autism Spectrum Disorder (ASD); I work with parents and teachers to put in place strategies and structure the environment in such a way to support the learning of children with autism.

I have also been involved with a great team of individuals and organisations through various collaborative projects since 2009, which have aimed to raise awareness about autism and train professionals in assessment and intervention.

Q: What is autism, its causes and symptoms?

A: Autism is a complex neurodevelopmental disorder; it is a lifelong brain-based condition that is usually apparent from early childhood. Some individuals may be identified when they are older but there are some signs when you look back to the early childhood period.

The causes of autism are still being researched and are as yet not well understood. It is thought that there is a strong genetic component and some possible environmental factors that likely impact on the child before he/she is born or certainly very early in life. 

Autism is characterised by differences or challenges in two main areas: social communication & interaction, and restricted & repetitive behaviours and interests. There is a common saying in the autism world that ‘if you know one child with autism, you know one child with autism’ and this is because there really is a spectrum or diversity in what exactly autism looks like across different people.

For example, some persons with autism do not use spoken language at all, although they may have other ways of communicating if given the opportunity. Others, may have an extensive vocabulary and speak a lot but have difficulty with the social or functional use of language; that is, saying the socially appropriate thing in the given context.

Both examples involve social communication difficulties but they present differently. Some persons with autism have a lot of difficulty adapting to changes in routine or the physical environment while others do not. Some are highly sensitive to visual stimuli (light, colours, movement), sounds, smells, tastes or touch, while others have a low sensitivity to such sensations.

Autism is identified through a group of symptoms (not just one or two) seen in a range of contexts, which is why a formal assessment by trained professionals is required to diagnose it. Some of the symptoms of autism are seen in other conditions as well so it is also important to account for any alternative explanations for the symptoms observed. There are also other conditions that are not part of the diagnostic criteria but are seen more commonly in the autism population compared to the general population; this includes intellectual disability and seizure disorders.

Q: How does autism affect individuals with the condition and their loved ones?

A: How autism impacts on each person’s life will depend on that individual’s own profile of strengths and challenges, and the support they get from family, professionals and others. Appropriate support and intervention, especially when it is provided early in the child’s life can make a huge difference.

Some common challenges include difficulties in understanding instructions and expressing needs which can be highly frustrating for all involved; difficulties understanding and regulating emotional states; difficulties understanding concepts like waiting and turn-taking, and being overwhelmed by sensory stimuli, termed ‘sensory overload’, which can be highly distressing.

Some children with autism also have disturbances in their sleep, in some cases sleeping only a few hours at night. Aside from the symptoms of autism itself, parents report that some of the hardest issues to cope with come from the attitudes of others and how they treat individuals with autism and their families. This is why raising awareness is so important.

It is not all about difficulties though. Persons with autism have brains that work a bit differently from the usual and that sometimes means that they can be very good at some things. For example, they can be very good at maintaining focus, seeing details and recalling facts. Some people can be extremely talented in areas like mathematics and art.

Q: Is autism curable?

A: There is no known cure for autism and it can be argued that it should not be seen as something that should or needs to be cured. It is rather part of the natural diversity of humanity with positives as well as challenges.

Persons with autism need to be understood, accepted and given the appropriate help to allow them to access all the opportunities that anyone else has. We all need help with some things after all.

Therapies that address particular communication, learning, behavioural and daily living skills can have a big impact to the person’s wellbeing and development. This could involve professionals such as paediatricians, speech & language therapists, psychologists, occupational therapists, and of course, teachers, aides/assistants and parents.

There may be medical interventions that respond to other conditions that the person may have, such as Attention Deficit Hyperactivity Disorder (ADHD) or epilepsy.

Q: What is the situation with regard to autism in Seychelles?

A: It is estimated that around 1% of the global population is somewhere on the autism spectrum, although there are differences in the information available from different countries. If this rate applies to Seychelles, we could expect to have around 950 persons on the autism spectrum.

We currently have around 100 people diagnosed with autism in Seychelles, most of which are children under 12. However, we have only had a trained multidisciplinary diagnostic team in place since the end of 2012. Prior to that, a diagnosis was made by a paediatrician based on clear clinical presentation and a few children were diagnosed; others were diagnosed overseas.

As awareness has increased, more children are now being referred for assessment and we are likely to see the number of diagnosed cases increase. We also expect that there are a number of adolescents and adults in Seychelles who have not been identified or have been given another diagnosis. One of the projects underway is to provide further training to the diagnostic team on the assessment of adolescents and adults.

Q: What challenges do the concerned authorities face with regard to autism in Seychelles and what can be done to curb these?

A: One of the major challenges that we have in Seychelles is lack of trained professionals to provide appropriate intervention services. This includes speech therapists, occupational therapists, psychologists and others. The few professionals in these fields do work with children with autism and their caregivers but there are long waiting lists, and they are not able to give as much time and attention as would be ideal for each client, because of their heavy caseloads. Also, all these professionals do not work only with persons with autism.

In addition, we are lacking in some specialised training and resources. Through collaboration between the government of Seychelles, Autism Seychelles, Autisme Réunion and ALEFPA (a French organisation that provides services in the social and disability fields), we have started giving training to teachers, health workers and social workers, but certainly more is needed.

When it comes to education, most children with autism attend mainstream school, be it public or private. Some attend the School for the Exceptional Child or the Praslin Centre for the Exceptional Child which is based at Baie Ste Anne Primary School. Whichever school setting they are in, most children with autism will need some kind of additional support. This could range from social skills training, help with transitions when there are different people or new expectations, to intensive behavioural interventions and one-to-one assistance. The challenge is both in having the number of people to effectively provide these services and adequate training for these professionals.

Another big concern is what happens after secondary school in terms of training, employment and everyday life. Programmes or services addressing these areas are extremely limited.

One of the roles of the National Committee for Autism is to develop a national strategic plan to address such concerns and coordinate services. The projects we already have underway are a good start but it will take time, effort and resources to get to the point where we can be satisfied that we are providing adequate services for individuals with autism across the lifespan.

In terms of the lack of professionals, over the past few years we have been conducting career sessions in schools, trying to encourage students to consider careers in these fields. We have also had some discussions with the Agency for National Human Resource Development (ANHRD) about training. We hope that professions such as psychology, speech pathology, occupational therapy and special education can be considered in the highest level of priority in terms of our national human resource needs.

Q: Are there any myths or misconceptions about autism?

A: One of the very damaging (and incorrect) myths that used to be believed is that autism is somehow the result of unresponsive or bad parenting. It isn’t. As with all children, parenting makes a difference to how children develop and behave, but parenting does not cause autism.

Autism is sometimes referred to as a ‘hidden disability’ because it is not evident from looking at a person that they have autism. As a result, some might doubt that a person has autism or minimise the very real challenges that they are experiencing. As I said before, if you know one person with autism, you know one person with autism. What applies for one person, might not apply for another, so it is important to recognise each person as an individual.

There is a lot of focus on children with autism but it is important to recognise that autism is a lifelong condition, although how it is expressed might look different at various stages of life.

Many of the behaviour challenges we see in people with autism are not a feature of the autism but rather a consequence of autism. For example, it might seem like a child with autism is throwing a tantrum in a supermarket, but it could be that the lights, sounds and/or smells are overwhelming and distressing for the child, so they are trying to escape from or otherwise cope with it.

Some people with autism communicate verbally, others do not. The fact that a person does not communicate verbally does not mean that they are not intelligent or that they have nothing to say. Alternative ways of communicating using picture systems, sign language or written language (including on electronic devices like tablets) have allowed many people with autism to express themselves.

From my perspective, working with children with autism, their parents and teachers, autism brings a lot of challenges, for individuals and our systems, but it can also be very rewarding. It is great to see the amazing progress that children can make, the enthusiasm of a teacher who gains insight into one of their students and has in hand some strategies to try, or the satisfaction of a parent when one more small step has been made. What is evident to me is that it is teamwork that has allowed us to make progress in the autism field over the last 10 years and it will take great teamwork, with each person doing their part, for us to keep making progress.

Q: What is your advice to anyone who is in some way or another being affected by autism?

A: I find it hard to give general advice because each person’s situation is different. But, I would say that the word ‘autism’ might help us to understand more about the person but it does not change who the person is; like everyone, there are things that they find easy, others they find difficult, things they are interested in and things that they do not like. However, they are all capable of learning, maybe just at a different rate and in a different way than what you were expecting.

There are far more similarities between people who have autism and people who do not have autism than there are differences. People with autism should be respected, accepted and included just like everyone else.

For parents and other people working closely with people with autism, I know that things can be very challenging at times. From experience, we see that efforts put in by a team of people can make a big difference, especially early on in life, so it is important that we keep at it, keep learning and put what we learn into practice.

Last year, I got to meet a young adult with autism in Reunion. He had started speaking quite late and had had some really difficult times in secondary school, with peers and some teachers not understanding him. When we met, he was successfully completing a work placement in a large company. When asked what advice he would have for those of us working in the autism field, he told us not to let go, not to give up, keep working at it, because it makes a difference. That inspires me and I could not say it better.

Image source: The Costa Rica News