Questions asked by siblings

One of our Siblings Groups was invited to ask anonymous questions of the team.

These questions were so interesting and so wide ranging I felt they may be the same questions that many of us want to ask. Below are the questions and an attempt at some answers. These are not necessarily the only answers or the ‘right’ answers as there are no absolutes in autism and for every rule there is an exception but they are a start and I hope they are helpful.

Sometimes when we feel really worried or scared the way to feel better is to feel in control. For many people with autism feeling very anxious is common so it may be that being in charge is a way of controlling the world to feel safe.

Many people with autism have sensory difficulty and eating uses many of our senses. Taste, smell, touch and sight in particular. It may be just that he knows he likes the taste of those two things and is worried other things won’t taste as good. It may be that the colours are comfortable for him, it may be that the texture of those things feels nice for him in his mouth, it may be that they smell inviting. It is probably a mixture of all of these things. The good thing is that mashed potato and sweet corn are both things that are good for him. So long as he keeps being offered other foods and encouraged to try them he will be fine. Imagine if he only liked ice cream and jelly.

Bullies are horrible! They exist because they have not been taught to care for others and like to feel powerful. People with autism are often bullied because they are ‘different’ and people who like to feel powerful often pick on those who cannot defend themselves. When people with autism act in a ‘bullying’ manner themselves it is likely that it is to do with wanting to be in control as described above. Either way no one should have to feel scared or be bullied.

People with autism often need to control what is happening to feel safe. That means not being very happy with change. So being fussy may be to do with wanting everything exactly the same. It may also be to do with his senses. If he cannot stand the feeling of certain material for example then he will refuse to wear certain things or if some kinds of sounds really hurt his ears he will try to block them out. It might also be that he has heard someone say something like ‘don’t touch that it is dirty and you will get germs’ and he has become very scared of ‘germs’ so won’t touch lots of things that actually are completely harmless. It may also be that he has difficulty making choices and is frightened of making the wrong choice, even in something that does not matter really like what he wears, so he gets ‘stuck’ and takes ages to do anything. It is most likely a mixture of all or some of these. It can make getting out of the house take hours!

There are probably several answers to this and they are all to do with biology and science. Autism is something you are born with and develops in some people and not in others. It is likely that in what is called the spectrum there are several different ‘causes’. If you imagine a rainbow shape then at one end you may have people who are autistic who have severe learning difficulties, never speak and might have some physical difficulties too and at the other people who are very clever and can write wonderfully or paint or do maths but cannot make friends then there is very little in common between them but they are all autistic. Genetics is one, there is something inherited in the combination of genes that make us who we are that makes some people autistic, it might be due to some kind of hormone imbalance, it might be due to the brain developing slightly differently in some people. No one really knows yet. It would be good to understand more so we can do as much as possible to help and get that help right more often.

In the dictionary a disease is defined as ‘any abnormal condition that impairs the structure or functioning of a living organism and that can be identified on the basis of specific signs and symptoms’. Autism is NOT an infectious disease – you can’t catch it from someone else. It is certainly something that stops people doing things like most other people and it can be defined by some specific signs and symptoms. The symptoms that usually define autism are having difficulty with communicating, not understanding social rules, not understanding what other people are thinking or feeling and having sensory difficulty. The word ‘disease’ is a scary one and makes people think of an illness that might be catching so we talk about ‘autistic spectrum condition’ rather than disease.

Computers only do what we tell them. They are reliable and we can control them. They work at the speed we tell them and although they are pretty clever they don’t ask you questions or talk in a way that is confusing or unclear. They don’t have emotions and get upset or angry and they don’t expect you to answer them – they give the answers. All of this is very reassuring to someone with autism. People are much more unpredictable and difficult to understand.

This is much like the answer to the food question. There may be a number of reasons. He may just know that he likes this game and that it makes him feel safe whereas trying something new is not safe. He may use it to control his environment by doing something very familiar and that could be the game but it might just as easily be singing a particular song over and over or tapping a window over and over. It might be that the game is just the right one for his sensory needs.

Like everyone else, people with autism are all individuals and their autism affects them in different ways. Some people with autism will keep a familiar toy or object with them all their lives. For others that item or comfort object may change as they develop and some may not have anything they are particularly attached to.

The world is full of amazing people. Some are incredibly musical, some artistic, some very shy, some are generous, some want power and some are unkind. I don’t know why people are the way they are. It can be genetic; some musical people have musical parents but then some don’t. It can be environmental; people who sit all day at the computer might get fat but some don’t. It can be political; people from powerful families may believe they have the right to have power over others but not all do. No one knows why certain horrible illnesses exist but they do None of these answer why people are the way they are and the same is true for autism. We are beginning to understand what autism is and what we can do to help but as to why? I have no idea. What I do know is that autism is nobody’s fault. It is not a punishment or a curse. It is just a condition that some people have and others don’t.

I don’t know! It is a very interesting question. What I do know is that where we run groups for children and adults with Asperger’s and with higher need autism the people using the groups talk about how good it is to feel accepted and to be with people who do not judge them. It is interesting to think how much or how little we all understand each other with or without autism. If we don’t have a condition that makes it difficult to appreciate what others might be thinking or feeling and yet still manage to hurt or upset people without intending to perhaps you understand him better than you think.

This is a very sad question and one that many parents get asked by a non-disabled sibling. As parents we should always try to give equal attention to all our children. We certainly love them all the same. Sometimes though, the needs of a disabled child take over despite our best intentions.. There should be time for you to be with your parents on your own every week so you can talk about the things that are important to you. You need to have your own interests and not be seen as your siblings carer on a regular basis. You are a valuable individual and must be allowed to grow and develop separately from your autistic sib however much you love them. It is really hard for parents to get this right but it is our responsibility to try to do so. A siblings group can help but your life should not be defined by your sibs autism. Bringing up any child with a disability is expensive and that can be a problem too as your family may not have as much money to let you do things as other families. Because you sibling needs all the extra help they will always get more attention but that should not mean you feel left out and you need to talk to your parents about how you feel if you can.

This may be because he is frustrated. When we cannot make ourselves understood it feels horrible and screaming may be a way of communicating that he is frustrated. It may be a sensory thing that screaming feels nice to him. If you give a huge scream you push out lots of air (try it) and that is a way of relaxing. Perhaps he screams to release tension. It is not nice for those around him but if you can see it as not just screaming but something he needs to do it might be easier to cope with.

This is a bit like the answer to the computer question. The TV is absolutely reliable. If you watch the same programmes all the time there are no surprises and people with autism usually hate surprises. Programmes come on when they are expected, they are familiar and safe. If you want to watch something different then that spoils the routine and is difficult for him to cope with. It may also be about controlling his environment as I mentioned before.

For some people with autism what we see as ‘age appropriate’ is irrelevant. Some people with autism do not grow up in quite the same way people without autism do. They may like some things that are more ‘adult’ and other things that are very ‘child like’. Sometimes wanting people to do things that are ‘age appropriate’ is more about others feeling uncomfortable than it really being a problem. If he only watched CBeebies and never did anything else then it would be a problem. So long as the rest of the family don’t have to watch CBeebies and if it makes him happy does it matter?

This is really hard to answer. We look for ‘triggers’ are there any really tiny signs that someone is going to get angry. We try to go back over everything that has happened not just immediately before the anger but in the hours before. Some people with autism have very long ‘process time’. It takes them a long time to think something through that has happened. So the anger may not be anything to do with what is happening at the point it bursts out. Sometimes someone with only become angry at home where they feel really safe when that anger is about something that has happened at school or elsewhere. People with autism usually have difficulty understanding that what they do even being very angry, will affect those around them so the anger may not be aimed at you but be about feeling frustrated or not understood and you just get the worst of it. It is always horrible though and very upsetting. No one should have to be hurt or attacked even if we understand why and are sympathetic. If the anger is physical then you need to get some help from a professional who can hopefully find ways to reduce that and make you feel safer.

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