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What is Autism

Autism is a life-long condition that affects the way a person perceives and relates to the world.

There is no cure for autism but there are many things that can make those with a diagnosis have a better and happier life. Autism is often known as ASC (autism spectrum condition) or ASD (autism spectrum disorder).

Asperger’s Syndrome is also known as ‘High Functioning Autism’ and sometimes people with autism and complex needs are known as having ‘High Need Autism’ or as ‘Lower Functioning’. These terms are often used in a general way and may mean very different things to different people.

Everyone with autism is different and autism affects people to widely varying degrees and in many different ways, which is why it is described as a spectrum. Some people with autism may also have other associated conditions such as a learning difficulty, ADHD or mental health problems.

Causes and Diagnosis

No one knows what causes autism although a great deal of research is being undertaken.

It is certain that differing factors cause varying things and that within the spectrum, a cause identified for one symptom may not be the cause for all.

It is important that once someone is diagnosed they get the best possible help as soon as possible and support is available all through life whenever new challenges arise.

Diagnosis may take place at any age although it is harder in adulthood. The starting point is a GP who can then make a referral to a diagnostic team. It is good if diagnosis takes place as a young child so that helpful strategies are identified to maximise an individual’s potential for a full and happy life.

Later diagnosis can be helpful and may explain a great deal to the person diagnosed, helping them understand and make sense of their lives as well as enabling them to access specialist support. Private routes to diagnosis are available from the National Autistic Society website.

Sensory Difficulties and Other Problems

Very many people with autism also have sensory problems.

These may be being particularly sensitive to certain kinds of light, sound, smell, taste or touch. They may also need to experience sensory input in ways that other people may find unusual such as liking very strong pressure or hating high musical notes.

All of these can make the world a very difficult place but with understanding, patience and sometimes with proper resources and advice things can be made easier.

People with autism sometimes have other problems such as Attention Deficit Hyperactivity Disorder (ADHD), learning difficulty, depression and physical health problems especially bowel and stomach ailments.

It is important that these are dealt with appropriately and that the autism diagnosis is not used as an excuse not to treat these.

What defines Autism

The degree to which people with an Autistic Spectrum Condition are affected varies.

But all have difficulty with:

  • Social interaction (difficulty relating to other people)
  • Social communication (difficulty with verbal and non-verbal communication)
  • Imagination (difficulty in the development of play and flexible thinking)

People with autism may have difficulty understanding that other people do not feel the same way they do or appreciate the same things they appreciate and may appear to lack empathy with others.

It may take someone with autism longer to process information especially if it is given verbally. Allowing time to work out what has been said and giving just one instruction or piece of information at a time can be very important.

Often not using words at all but using pictures or symbols can be a better method of communication. Although not all people with autism have learning disabilities, they all have difficulty making sense of the world.

Frequently Ask Questions

Is there a cure for autism?

No. There is no cure for autism but there are many things that can help improve quality of life for both the person with autism and their families.

How do I get a diagnosis?

You should start by visiting your GP who can refer you on for a diagnosis. If you cannot get help that way then the NAS website does have lists of private clinics who may help but you will have to pay for this.

How can I tell if my child has autism?

There are a number of clues you may notice, being slow to talk or not talking at all, being very anxious, not playing in the way you might expect, appearing to be in their ‘own world’, repeating everything you say but not conversing, hating changes, scared of loud noises or of bright lights or strong smells, wanting lots of tight hugs, not wanting to be hugged at all….All MAY be signs of autism but may also be signs of lots of other things or just part of the different ways children develop. If you are worried go and talk to your GP or health visitor but do ask for help.

Will they grow out of it?

No. Autism is a lifelong condition but that does not mean someone with a diagnosis cannot go on to have a happy and fulfilled life.

Should I choose a special or mainstream school?

That very much depends on the school and on the child. For some children mainstream school works with good support. However it is important to think about the child’s social life as well as their academic life and you need to make sure there are supports in place at breaks and lunch time and that your child knows where to go if they are feeling anxious or overloaded. Some special schools are excellent and have specific groups for children with autism. There are some autism specific special schools in the state, voluntary and private sector.

Is it possible for someone with autism to work?

Yes. Many adults with autism work. It is all about finding what they are interested in, what they would like to do and are able to do and then ensuring the right support. All job centres have disability specialists who can advise and there are autism specialist employment support services. It may help to do some voluntary work first as an introduction to the work environment and we offer supported volunteering in London.

Can an adult with autism live independently?

Yes although they may need support. Everyone is different but adults with autism have as much right to independence as anyone else. Finding the right accommodation can be difficult but that does not mean it is impossible.

Why do children with autism flap?

Flapping of hands and other kinds of movement may be very important to your child and how he or she controls their environment. If the actions are not hurting them or anyone else it might be best to ignore them and see if you can identify why they flap and if something is making them anxious. It is much better to find out the cause of different behaviours than just to try and stop them as they may just replace them with something more harmful or difficult.

I have been given a budget to pay for a ‘Care Package’ but I can’t find autism specific care, what should I do?

It is important to talk to as many providers as you can to get the best for your money. There are brokers who should be able to help you but if not then see if this Resources for Autism website provides any services that interest you and do the same on the NAS website. It is important to get carers who are autism trained if possible.

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 Aspergers 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.

It is likely that there have always been people with autism. Years ago they would have been seen as either ‘mad’ or ‘bad’. Thankfully we understand more now and have a name for what they are experiencing. As researchers find out more it may be that we can understand the causes better and perhaps prevent autism developing. There is no ‘cure’ yet. Some people with autism strongly feel we should not be looking for a cure as they are just different and different is not a bad thing. We should be looking for acceptance and understanding and hopefully excellent services that can help someone with autism have a really good quality of life. I think that the more we find out the better we can help.

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 CBBS and never did anything else then it would be a problem. So long as the rest of the family don’t have to watch CBBS 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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