Looking Beyond The Diagnosis
“Don’t think that your child is abnormal’-they are just different and we are all different in our own way” Parent
Contents Information
1
Support
5
Parent’s advice
11
The use of Art activities
15
Communication
20
Resources
23
Looking Beyond The Diagnosis
Introduction You’ve probably already been told that your child has autism. What does this mean? When a child is diagnosed with Autism Syndrome Disorder (ASD), parents and carers can feel anything; from relief that they now know why their child behaved differently to other children; through to disbelief and worry about what future their child can have. The reaction you have as a parent does not alter the fact that a diagnosis can help you and your child to understand the individual and particular personality traits connected with ASD, and can help both of you in developing ways to overcome the barriers encountered and also recognise personal strengths.
1
There is a spectrum of ASD ranging from people who have difficulty with basic tasks through to people at the high functioning end of the spectrum, who often have their diagnosis identified as Asperger’s Syndrome. When a child is diagnosed with ASD, many parents are keen to find out as much as they can about the condition. This booklet will give you some general information and highlight particular information regarding students at college and university. There are some suggestions of where to find more information in the Resources section of this booklet.
“Environmental issues can be a problem to people with ASD. It could be a hypersensitivity to light, sound, touch or a combination of any of the five senses.� 3
3
Looking Beyond The Diagnosis
What are the common signs of ASD? Developmental differences are usually the first to be noticed. Often the ‘triad of impairments’, social imagination, communication and repetitive behaviour give the biggest clues. There is generally a difficulty with eye contact, nonverbal communication, social interaction, coping with changes to routine and structure, and applying past experiences to current or future situations. In addition, people with ASD can have problems with anxiety, Obsessive Compulsive Disorder (OCD) or depression.
There can be an obsessive interest in a particular subject which can be anything from Pokémon to an interest in Languages. However, symptoms vary enormously from person to person. It is fairly common for a person with ASD to suffer from high anxiety levels when confronted with having to go somewhere new. Finding a way to offer a reasonable level of reassurance and safety for the first visit to a new location can help someone with ASD to make the most of a new situation. Environmental issues can be a problem
to people with ASD. It could be a hypersensitivity to light, sound, touch or a combination of any of the five senses. This can make noisy group environments and public gatherings difficult for a person with ASD. Most public buildings, including educational ones, have fluorescent strip lights that can be painful to work under for someone with ASD. ASD has been thought of as more likely to occur in boys than girls. This idea has been challenged in recent years and more girls are now being diagnosed.
“One of the things that a lot of autistic people need is a clear goal.”
4
Looking Beyond The Diagnosis
Support How students benefit from the college or university assessment process: Support is available to students at college and university to help them complete their education successfully and make the most of the opportunities available. Students with ASD who received support at school will be able to get support at college and university. Other students will need to be assessed to see what support they need. Types of support available include note takers, in-class support, support tutoring, specialist support tutors, counselling, and an advice centre. Support can help students with organisational
skills, motivation and finding the right help and advice if they have been recently diagnosed or have any concerns. Many students with ASD are at the high functioning, Asperger’s Syndrome, end of the spectrum and know they can do the tasks set, but find it difficult to deal with the college environment and the social expectations of peers. Sometimes support can be about working out where an extreme emotion has come from and negotiating what exactly is needed to help.
Students are assessed in order to ascertain how their disability affects their ability to study at what would otherwise be their normal academic level. Strategies and interventions to help them to achieve this level are discussed and recommended and also (hopefully) funded, this may include equipment such as a computer and assistive software and/or personal support such as funding for a support worker, note taker, amanuensis etc. (Assessor at The University of Derby) The assessment process is to make sure every student has an equal opportunity to succeed in his or her chosen area of study.
“We discuss support available for the student and what getting the diagnosis means for them�
5
“There are different environmental issues that can be a block to people with autism...�
4
Looking Beyond The Diagnosis
We discuss support available for the student and what getting the diagnosis means for them.
7
“Those students that do struggle will have more intensive support during their time at university, which will gradually decrease over the three or four years that they are here to prepare them for life after university when they might not receive any support at all.�
Students who think they might be on the spectrum are referred for diagnosis and the college or university will support them through the process. When supporting a student with ASD it is important to use clear language that is not ambiguous and clearly structure the support sessions so the student knows what to expect. Most students with ASD will struggle with organisation and prioritising their workload, so part of the support is to devise a timetable that works for the individual student. The student might find it difficult to approach their lecturers to ask questions and we can support the student with that. Our aim is to empower the student
to be able to do this themselves (Support Tutor) A support session is an opportunity to discuss any concerns with the support worker and make a plan of action how to tackle potential difficulties. The support is organized to enable the student to become an independent learner as much as possible. Many ASD students can engage in their studies effectively and the support sessions are used to keep them on track and for emotional support, maybe encourage them to interact socially with their course mates or join societies and discuss other aspects of their student life.
8
Support sessions can also focus on everyday living skills. Sometimes students receive extra hours of support in the first few weeks of their degree to help them with orientation, budgeting and cooking skills. The best way to start is by breaking down the student’s workload into small manageable steps to avoid them getting overwhelmed with the task ahead. It is most important to be clear about the arrangements and how I will be
9
supporting them. I will let them take the lead in what we do and will try to meet them in between tutorials so that we can build up a rapport.(Support tutor)
or lists, which help by allowing them to cross things off as they go. I tend to concentrate on one task at a time to avoid confusion. (Support tutor)
Support sessions give students the skills they need to study, achieve and progress. In addition they can develop skills they need to function in everyday life.
People with ASD have difficulties with social skills such as interpreting facial expressions. This should be addressed through an understanding of their difficulties.
To help autistic students with their organisation skills I usually use colour coding, special folders for different pieces of work
Looking Beyond The Diagnosis
“I always avoid meeting the student in a busy environment, especially to do work, as they will often struggle with the sensory input and might feel overwhelmed or distracted.”
“I would encourage people with ASD to understand the impact that social skills, such as understanding facial expressions, can have on other people. Especially if incidents have occurred in the classroom due to misunderstanding social cues”
10
Looking Beyond The Diagnosis
Parent’s advice ‘I’ve learnt a lot from my son.’ If your child has been diagnosed with ASD, you are not alone. You might be worried about raising a child on the autistic spectrum. It can be hard sometimes and you will want to do the best for your child. The information in this section comes from interviews with two parents who have children on the autistic spectrum.
“Be patient’ and ‘try to see things from their perspective.”
11
Make sure you get all the benefits and help you can to make life a little easier. I got some good support from my health visitor who was a life saver in the early days. Then we were left floundering for a few years until my son was referred to CAMHS and we had a child psychiatrist and a psychologist to help us.
12
Looking Beyond The Diagnosis
“Don’t beat yourself up. Don’t expect to get it right all the time. It will get easier as they get older.”
Don’t expect them to ‘get it’ in the way others do- sometimes I had to say ‘look, I know it doesn’t make sense but we all have to do it, it’s the rule, so treat it like a game and play by the rules-the fact that it seems like a stupid thing
to have to do is irrelevantwe all have to do it.’ ‘It’s really important to be clear and explain things as they really struggle with frustration and this can often be overcome by saying or doing the same thing in a different way,’ (Parent)
14
Looking Beyond The Diagnosis
The Use of Art Activities Art, particularly visual art, can provide another way for people with ASD to express themselves, or for parents, carers, and tutors to communicate with people on the autism spectrum. It is not for everyone but it’s another potential way to communicate. There are groups such as Q Club, based in QUAD in Derby, that provide arts activities for children with ASD. Q Club is an after school club which helps young people on the autism spectrum get used to working in a group situation making art in a fun environment and developing social skills as a consequence
15
Is art a good approach to communicating with people on the autism spectrum? It depends what you mean by art. Some children don’t have good fine motor skills so find traditional art frustrating, but images that look real are often preferred to abstract images. There are a lot of options from computer art to weaving, felt making and pewter work. There are lots of things that help, but no one size fits all. People with ASD are often not good at ‘pretend play’ or making up stories, but they view the world in such an interesting way it kind of makes up for it. Great attention to detail and ‘seeing’ things that most of us don’t notice are a couple of the strengths people with ASD have. There is no problem with imaginative thinking in creative media; the issue is imagination in social contexts.
“His ideas can be really perceptive. Art was always a good way for him to share his anxieties and frustrations as well as happiness and enjoyment.�
Looking Beyond The Diagnosis
Groups such as Q Club can help to overcome social barriers and because it is a group of people who have been socially excluded they are, perhaps, a little bit more accepting of each other’s problems. The use of creative artwork as the basis for a group getting together gives them a reason to do things. If the activity is flexible enough to allow people to bring their own personal interests to bear on the work then that helps to keep focus, there’s usually one special interest that
17
is a major part of life when you are autistic. The channel of interest can be very narrow. Visual communication can help with that and teaching young people how to create their own visual communication can only be a good thing. Sometimes Q Club parents will say ‘This is the only thing that really makes them tick’. Art opens up communication because people are able to express their ideas in a way that everybody can understand. It might be that they can’t necessarily
communicate using the usual form of written and spoken language. Art activities certainly expand anyone creative mind. Autistic people need to work with arts that they are interested in, because if they are not interested in it then they’ll find it very difficult to motivate themselves. It is best to avoid situations that are very chaoticn and, for younger people, art activities that have a complicated process.
“There is a misconception that people on the autistic spectrum are unimaginative, they are more likely to struggle with imaginative understanding of social interactions” “I think they can have an amazing imagination. I think they draw a lot on their environment and what’s around them and they adapt that to the situation that they ones are in.”....(Q Club)
18
“Communicating with someone with autism - I think that most people would find it hard because we aren’t always aware of the nonverbal aspects of communication such as eye contact and body language”
19
Looking Beyond The Diagnosis
Communication In most people’s minds the idea of communicating with an autistic individual is daunting because of the fear of saying the wrong thing, and misunderstanding the person with ASD. The following comments about communication were collected from parents and support tutors from college and university. My son doesn’t listen to other children, doesn’t pick up on social cues, can’t take turns or think about things from their point of view. As a result, he had no friends when he was younger. (Parent 1) People with ASD are often very honest and blunt in their spoken communication.
For example, the coordinator of Q Club said “Some of the participants really tell the truth! For instance I asked them ‘Are you listening to me?’ and they said ‘no because what you’re saying is just boring.’ Fair enough, let’s find something that is interesting.” ‘Communicating with someone with autism - I think that most people would find it hard because we aren’t always aware of the non-verbal aspects of communication such as eye contact and body language and we take it for granted - people with autism find it incredibly difficult and may seem ‘odd’ because they don’t understand or are ‘different.’ (Parent 2)
20
Looking Beyond The Diagnosis
People on the autistic spectrum can often find visual communication more effective than written or spoken communication if it pictures something real in a clear way. A good example of this is facial expressions being shown in a cartoon style of happy, smiley face and sad face with a mouth pointing down at the two ends.The best way to communicate with autistic people is using simple clear language that
doesn’t use metaphors and using backup pictures and words. Don’t just smile and nod, back it up with ‘I’m really happy you’ve done that.’ ‘I’m really pleased you’ve done that.’ Always backup any facial expressions or body language with verbal explanations. When asking a person with ASD to do something or not do something give them the reasons why.
Ask specific questions such as ‘What do you feel about this?’ Not ‘How do you feel’.
21
21
Looking Beyond The Diagnosis
Find Out More At...
•
http://www.autism.org.uk/ National Autism Society
•
http://www.autismsupport.co.uk/ Derbyshire Autism Services Group
•
http://www.nhs.uk/conditions/autistic-spectrum-disorder/Pages/ Introduction.aspx NHS- Autistic Spectrum Disorder
•
http://autismforbeginners.wordpress.com/ Social blog for people communicate each other
23
Thank you to all artists, parents and support tutors, not to mention the Art Coordinator for Q Club based in Quad for participating in the questionnaire and interviews.
24