This guide is to help young people to understand a parent who has or thinks they have autism. There are different types of autism. Your parent may have a diagnosis of Asperger syndrome or high-functioning autism, which are both types of autism.  

What is autism?

Autism is a type of disability which affects about one out of every 100 people. People with autism find some things difficult, such as:

 

  • telling people what they need, and how they feel
  • meeting other people and making friends
  • understanding what other people say and think.

 

People with autism also like routines and can find it difficult when plans change. They can also be over- or under-sensitive to sounds, touch, tastes, smells, light or colours.

No two people with autism are the same. This is because they have their own personalities and experiences, and because autism affects people in different ways.

Many people are diagnosed with autism as an adult. Some adults want to see a doctor about a diagnosis because they have felt different to other people all their life and they want to know why. Some adults will read about autism, talk to their family about it and decide that they probably have the condition, but they do not feel they need a diagnosis.

How will my parent's autism affect me?

Your parent's autism could affect you and your family in lots of different ways. Here are some situations we often hear about:

1. My mum doesn't seem to know if I'm feeling a bit down. Why is that?
 
Having Asperger syndrome can make it hard for a person to understand what other people are thinking. For example, you may be upset because you've had an argument with a friend but your mum may not notice as she finds it difficult to understand facial expressions or body language. Your mum may not find it easy to "put herself in your shoes" or realise that you need a hug. This doesn't mean that she doesn't love you; she just hasn't understood how you're feeling so you may have to tell her. She may also not realise that you need her to tell you that she loves you, as she would expect you to know this without telling you.

2. I get a bit confused at times at home as I'm not sure when dad's actually speaking to me.

You may find that your dad doesn't look you in the eyes when talking to you: people with autism can find this hard to do. Or he may seem to stare. This can feel a bit awkward and embarrassing, but doesn't mean that he's not listening to your answers.

3. Why is it that my dad doesn't always seem to understand what people mean when they talk to him?

We don't always understand what we're told straight away. However, people with autism often take a little longer than most people to take in what people say to them. They may need time to think about what's been said before answering. Your dad would find it helpful if other people spoke to him in short, clear sentences, rather than long rambling ones, as these can be confusing. This advice may be helpful for you, so that you can get your point of view across.

4. My dad is obsessed with trains and goes on about them all the time. 

It's quite common for people with autism to have a particular interest which they talk about a lot. It could be almost anything; for example, transport, flags, insects or maps. Some people will love the same thing all their lives, while others may be interested for perhaps a few weeks or months. If this becomes too much for you, it's a good idea to say, for example, that you can talk to him about it for five minutes, but that you then have to go and do your homework. This may seem rather blunt, but it's helpful for people with autism to have clear explanations.

5. Mum keeps on at me about school all the time and shouts at me all the time at home if I don't do things straight away.

Lots of young people feel pressure from their parents about school and home life. This is probably because they want their children to get a good education, and because they want them to help around the house and be aware of what needs to be done. However, you may feel that your mum is spending too much time talking about how hard you should study and can't seem to see the need for anything else in your life. Sometimes people with autism will become focused on one particular object, person or situation and find it very difficult to stop talking about it. Try sitting down with your mum and telling her that you know that school is important, but that you need to do other things as well, giving examples. This may take time and remember, try to keep what you say short and clear. It could also be helpful to write down what you want to say really clearly and give this to your mum for her to think about.

We're sure that you're not the only young person who is shouted at because they don't do what their mum tells them to. Your mum may tell you to do something and when you don't do it straight away, she may get really cross. Do you take ages to do things? Do you think she has a reason to get cross? Or is she being unreasonable? Do you say that you'll come to help, or be ready for school "in a minute", meaning "quite soon"? If you say "in a minute", it may be that she'll understand what you said in its exact, literal sense, meaning exactly one minute's time. People with autism tend to understand things literally, which is why it is important to be clear and exact when answering them. Again, if you really think that she's unreasonable, it may be a good idea to write down what you think for her to consider.

6. My dad's really cross when I play the music I like.

Lots of parents don't like the music their children play, so you're not the only one experiencing this kind of reaction! Some people with autism love music, some don't. Or they may like a particular type of music but not the type that you like. People with autism can have extreme sensitivity to some things; for example, noise. If your dad gets really cross about it or puts his hands over his ears when you have your music playing, even if it's not very loud, it may be that he's got really sensitive hearing. You may have to find a compromise with your dad. Perhaps you could have your music on loudly when you know he's out of the house or you could buy some headphones. Having very sensitive hearing can be painful and can make someone cross or impatient. 

7. Dad gets really stressed about me going out with friends or having friends home and I find it all a bit difficult to deal with. What can I do?

It's possible that your dad may not see the need to socialise himself, so finds it strange that you want to have a group of friends. He may also not find it easy to have a number of strangers in the house because he finds any change in the usual daily routine hard to deal with. You may like to talk to him about what it is that you get out of being with your friends and why they're so important to you; for example, their companionship, a chance to talk and share common interests.

It's always helpful to check with your dad that it's OK to go out with your friends and to give clear details of where you're going, who with and when you'll be back: most parents want to know that. You can try to prepare your dad for your friends' visits by telling him when they're going to come to the house, for how long and where you'll be in the house, so that there isn't too much disturbance. It's a good idea to explain to your friends beforehand about your dad's disability. This can help them understand some of the things that they may find a little unusual or eccentric in his behaviour and why he may be really strict about you being home on time.

8. Mum gets stressed if something unexpected happens.

People with autism can become anxious if there is a break or a change to their usual routine. Your mum will find it easier to cope if she has a warning and if the change isn't sprung on her. She may like to have rules and want to stick to them. This may be hard for you, as you may like to do things on the spur of the moment. It can make life especially difficult for you if you break a rule. One teenager gave us the example of how angry his dad was when he was late back from a guitar lesson. His father couldnt seem to understand that he was late back because he had a flat tyre on his bike and had to walk. All his father could see was that he had broken the rule of being home in time for his dinner. He had to wait until his dad had calmed down to explain more fully the reasons for his lateness.

It is best to wait until your mum is calm before discussing any sudden changes in routine. You may like to write down some examples of circumstances which are out of a person's control, pointing out that they're unavoidable, nobody's fault and are OK to happen. This should give your mum some guidance and reassurance.


Advice from family members

In her book 'Growing up in an Asperger family' Maxine Aston writes, "It is the difficulty with empathy that has the biggest impact on the parents' inability to understand their children and to recognise that their thoughts, needs and perceptions are different to their own. In gaining more understanding of autism, you can begin to understand your parents' difficulties and needs. You can then think about how best to communicate your own thoughts, feelings and needs so that you can have a good relationship with your parents."

A daughter of a person with Asperger syndrome says, "Even now (nearly two years on), I sometimes become infuriated with Mum's obsessive nature about certain things and other aspects of her condition - but in understanding that it's just the way she is, I have come to accept her better and I'm sure that makes both of us happier. I sometimes think it might be easier if she was 'normal' so she would allow us to listen to music in the car with her, or act with more spontaneity, but it's the way she is and I wouldn't really want to change her for the world."

If you want to speak to or email someone about your own situation, you can contact the Autism Helpline on 0808 800 4104 Monday-Friday, 10.00am-4.00pm. Anything you say in your telephone conversation will be confidential and you don't have to tell us your name.


 Websites

A World Apart
www.worldapart.org
The website about the lives of a couple with autism and their children.

Neurodiversity.com
neurodiversity.com/autistic_parents.html
This website has a section about autistic parents and parenting, with links about/for parents with autism.

Teenissues.co.uk
www.teenissues.co.uk
UK website offering advice for teenagers about lots of different issues, including school, family life and friendships.