Autism: Questions not asked

What is Autism?

Autistic Spectrum Disorder, as the name suggests, covers a variety of symptoms and varies from person to person. There is no known cause, although some research suggests that it may be hereditary and, the Autism Society states that “while no one gene has been identified as causing autism, researchers are searching for irregular segments of genetic code that children with autism may have inherited.” There is another theory that “children are born with a susceptibility to autism, but researchers have not yet identified a single “trigger” that causes autism to develop.” Further theories include environmental factors, unstable genes, and problems during pregnancy.

What does Autism look like?

This, again, varies with each person. Typical traits include difficulty in understanding and interpreting aspects of social communication, heightened sensitivity to touch, taste, smell, etc, and highly-focused interests often in a single subject (www.autism.org.uk). This is a very short list and, while there are many variations, there will also be those on the Autistic Spectrum who do not show, or appear to show, some of these ‘typical’ traits.

Getting a diagnosis

The process for getting a diagnosis of Autism can vary depending on whether it is for a child or an adult, how old the person is and, in some cases, the area in which they live. For children, advice may be given by a school or nursery, or, for children not attending school, a health visitor or GP may be able to make the appropriate referrals. A parent may ask a GP for a referral to a psychiatrist or clinical psychologist. For adults seeking a diagnosis, a GP would also be the first port of call.

The diagnostic testing may involve one or two individual professionals, or may include a larger, mulit-disciplinary team. Either way, there is no need to worry. Questions may be asked about behaviour, environment, interests, and behavioural tests are carried out by specially trained professionals. These tests should not be distressing to the person being tested and often involve play and concentration tasks. Again, the exact criteria will be different with different teams but the tests are simple and non-medical.

After diagnosis

Often, despite families finding all the help they need to get a diagnosis, it is common for people to feel lost or to have questions which are not answered after diagnosis. In some localities, there are support groups and it is a good idea to seek them out. GPs, children’s centres, nurseries, schools should be able to provide information about groups in the area. There is also information and support available from organisations including The National Autistic Society (www.autism.org.uk)

Some common questions include: “Is it my fault?”, “What can I do?”, and “Will my child lead a normal life?”

First and foremost, it is nobody’s fault. Parents feel all kinds of emotions before, during, and after a child is diagnosed with Autism. It is normal to feel helpless, upset, or angry, even alongside feelings of relief.

Whether someone with Autism will lead a normal life will depend on the exact diagnosis. For many, this is perfectly possible. Some will, depending on their exact needs, always need round-the-clock care. Others will, with the right support, be able to go to mainstream schools, go to college, find jobs, have families of their own, partake in activities and pursue their interests. Others, still, may need to learn coping strategies but live a perfectly normal and independent life.

One important thing to remember is that, while it can be stressful and draining to go through a diagnosis and to care for someone with Autism, do not forget other family members. Ask them for help. Siblings can feel left out so involve them, wherever possible, and explain the situation. 16 year old Rhys Tamborski, whose younger brother is Autistic, has said “I know my Mum needs a lot of help with my little brother sometimes and I like helping but sometimes Mum and I can be too tired to spend quality time together when my brother has gone to bed.”

Families often find that their other children show behaviour issues during their sibling’s diagnosis. This, in many cases, is simply due to a lack of understanding and attention. The other children may be resentful of the attention given to the child being assessed, or may have issues which have been missed while parents have focused on the Autism diagnosis.

Living with Autism

From the perspective of an Autism Mum:
“When my son was diagnosed, he was 3 years old. His dad was angry but I was relieved. I have another child who was 9 at the time. I am so grateful that I did have him because he’s always been so well-behaved and hard-working so that helped me when I started questioning what I’d done wrong with the younger one. The diagnosis was 8 years ago now and there have been some difficulties. I lost count of the doctors and specialists appointments. Thankfully, he doesn’t have so many of them now but he’s about to go up to secondary school and there are so many extra worries on top of the usual worries for this time in his life. Home life is OK. He copes quite well with change and he’s learned a lot of strategies. For example, he has auditory sensitivity. When he was younger, he would scream at the sound of the hoover or a hand dryer. Now, he anticipates the noise and either leaves the room or covers his ears. He’ll even use the hoover!
The thing I find most difficult is explaining his Autism, and trying to find the right support for him. He’s well-behaved and works to expected levels or higher at school. Some traits, like speech delay and lack of eye contact, are not issues for him and these have led to people assuming that he can’t be Autistic. I also feel that I don’t spend enough time with my other child because I have so many appointments, meetings, and I’m having to spend so much time meeting extra care needs.
My son says that he knows he has Autism and he understands that that is the reason for the way he does certain things. There are things he doesn’t understand, like why he needs to act a certain way in some situations, and he is very matter of fact in his relationships. He doesn’t ask many questions about it and most people wouldn’t know that he was Autistic. My son adores my partner, who is Autistic too, and I think that’s helped my son to understand himself a bit better.”

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