Supporting Young People with Autism: Try, Try and Try Again!
At our 21st Passage Professionals Network evening we invited Jean-Marie Govaerts from Autisme Luxembourg to celebrate World Autism Day by sharing some insight into his experience of working with young adults diagnosed with ASD in Luxembourg.
A diagnosis of Autism Spectrum Disorder (ASD) is given to people who show a range of traits or deficiencies in certain situations. These are usually to do with the ability to process sensory information, to read social situations and communicate clearly with others. It is considered to be a spectrum disorder because many of the identified traits displayed by children and adults may vary from person to person and throughout the lifespan.
In fact there is a lot of diversity in how these traits may show up. The diagnosis takes into consideration how high-functioning a child or adult appears to be in their everyday life and interactions. In the past a person at the higher end of the spectrum would have been diagnosed with Asperger’s Syndrome. Added to this often a person diagnosed with ASD may have another diagnosis including Dyslexia, Dyspraxia, Sensory Processing Disorder or ADHD. In real terms this means that no two children or adults diagnosed with ASD are likely to be the same. This is why we need to use a variety of techniques or methods to support them and keep on experimenting until we find something that works.
Jean-Marie began by commenting on how he was often asked if there was an emerging pandemic of Autism, because of the steep rise in diagnosis, but his feeling was that with new technologies and awareness we are actually recognizing that many people who may have been labeled neurotic or with some other disorder in the past, were probably in fact Autistic. Autistic Spectrum Disorder is not a disease, it is a neurological difference in the way some people’s brains develop. We cannot cure ASD, but we can support, train and create better environments for Autistic people to thrive in. And as an added bonus we create understanding and sensitivity to diversity and difference in our society.
How do We Create Better School Environments for Children with ASD?
Training and awareness
In Luxembourg children with special educational needs, depending on their severity, are integrated into mainstream schools. This can create various challenges and opportunities for children with ASD. Immersion in a normal school environment means they get to practice their social skills; however this can lead to some difficulties because children are not necessarily good at empathy. The schools themselves can make their environment more supportive by training teachers and staff to recognize how to support these children (and other children with additional educational needs) and by raising awareness amongst the children themselves.
Helping children to cope with everyday challenges
Children in general, and most adults, prefer predictability rather than change. Children with ASD often feel even more threatened by change and prefer to keep themselves ‘safe’ in rituals, repetition and clear rules. Schools can ensure that these children where possible are able to carry out some of the rituals they find comforting, and are well-informed of timetables, changes (in advance) and what is expected of them; this enables them to predict what is going to happen next.
There are some areas of particular concern for children with ASD. For example break times often mean unstructured, unpredictable time with lots of social interaction with peers. Sports or PE can also create anxiety in children with ASD, because they often have a poor mental map (spatial awareness) of their bodies and can be uncoordinated. Competitive team games can create even more stress as children have to practice coordination in themselves, spatial awareness of others and social skills in interaction and all this whilst not letting their side down!
Child by child – they are all different
Schools may consider on a child-by-child basis how they can help these children during these activities or provide alternatives without excluding them. One suggestion is to provide the high-functioning ASD child with a booklet where they can write down or use images to identify particular challenges when involved in these or other social interactive activities. These booklets can be analysed with adult support after the event.
Alternative support that might help ASD children outside school
As we have already discussed the child with ASD will present differently depending on their own unique mix of traits and/ or other diagnosis. Outside support may be found in therapies such as Cognitive Behavioral Therapy, Sophrology, Music or Art Therapy, Occupational Therapy, Aromatherapy or Massage. A regular practice of yoga, martial arts, practicing individual sports like swimming or just going for a run or walk in nature can help reduce stress in children with ASD. Animal therapy i.e. taking care of pets or spending time with animals has been shown to help too. The school and parents should be encouraged to work together when seeking support inside and outside the school environment.
Improving communication skills
Children and adults with ASD often struggle with interactions with other people. Reading social cues (facial expressions, voice intonation, body language,) is particularly challenging. In return their own lack of awareness in their body language, intonation, speech inflection and speech constructs can make them difficult to read and understand too. Added to this the ‘social rules’, that we implicitly learn as part of the socialization process in childhood, are not clear to the person with ASD. They often experience difficulty in empathy i.e. ‘putting yourself in someone else’s shoes’, which adds to making and maintaining friendships a struggle. Some of the tools to help them to develop these learned skills include using ‘social stories’, role playing, mirror or camera work. Teachers should be made aware of how these strategies can help all children to develop better interpersonal skills.
Why diagnosis is important
Many parents may be worried about ‘labeling’ their children by getting them diagnosed but in fact the earlier the diagnosis, the easier it is to start working on these skills, and creating a supportive and accepting environment for these children and young people to flourish in. In Luxembourg it is possible to get a diagnosis from an educational psychologist or through the Fondation de Autism Luxembourg (FAL). Alternatively some parents prefer to get a diagnosis from a specialist in their own country. It is a good idea to check out in advance what their child’s school or services in Luxembourg can support as a follow up to diagnosis.
Some Tips or Tricks for Parents (and Professionals)
Getting support and having breaks are really important for parents especially in the long term. Professionals can encourage parents to look at their own needs as well as their child. Often it is the parents (and siblings) who become neglected or neglect to look after themselves. Autisme Luxembourg offer the parents of the young people they work with some respite by taking them on trips. They also offer opportunities for young people (post mandatory education age) to develop their skills in the workplace by taking part in vocational training in workshops on gardening, a print shop and an industrial kitchen. There are obvious concerns for parents with ASD children about their children developing the skills to work and live independently after school age. It is important that parents seek out groups like Passage that can help them get an overview of schooling, services and support for parents in Luxembourg.
The Future for Young People with Autistic Spectrum Disorder
The outlook for children and young adults with ASD and other additional educational needs is improving as awareness of the value they bring to our society grows. Many more successful people today have been shown to have a different way of looking at the world. As more teachers and educational environments are trained and awareness improves parents do not need to feel so isolated when coping with the challenges of bringing up a child ‘outside the box’.
Jean-Marie Govaerts is happy to answer any further questions via the Passage team.
Further Information: Useful Links
The following links were provided by Jean-Marie Govaerts. They are a mixture of general resources and topic-specific articles.
The Natural Autistic Society: A leading UK charity for autistic people (including those with Asperger syndrome) and their families. They provide information, support and pioneering services, and campaign for a better world for autistic people.
Online Assessment Measures by the American Psychiatric Association
This link is a complete reference to assessment from the American Psychiatric Association.
OU Academic Dispels the Myths about Autism by Darry Khajehpour
An article that first appeared in October 2016, where Dr Ilona Roth (Senior Lecturer in Psychology at The Open University) dispels the myths about the condition and explains how the latest research is changing our perception of autism.
Further Information: Recommended Reading
Here are some resource books recommended by Jean-Marie Govaerts. The last one is written in German, but for those who know the language, it is a very good read.
Asperger Syndrome and Adolescence: Helping Preteens & Teens Get Ready for the Real World by Teresa Bolick (2004) – Fair Winds Press
Asperger’s Syndrome – A Guide for Parents and Professionals by Tony Attwood (1997) – Jessica Kingsley Publishers (1st edition)
Asperger – Leben in Zwei Welten: Betroffene Berichten: Das Hilft mir in Schule, Beruf, Partnerschaft und Alltag by Christine Preißman (2012)
Article by: Lynn Frank who is a coordinator for Passage.
Last updated: Thursday 27th April, 2017