Autism spectrum disorder 


Autism spectrum disorder - Graeme's story

Graeme describes his experience of having Asperger syndrome, one of the autism spectrum disorders.

Media last reviewed: 31/03/2014

Next review due: 31/03/2016

Caring for someone with ASD

Being a carer is not an easy role. When you are busy responding to the needs of others, it can affect your emotional and physical energy and make it easy to forget your own health and mental wellbeing.

If you're caring for someone else, it is important to look after yourself and get as much help as possible. It is in your best interests and those of the person you care for.

Our Care and support section has a lot of useful information on health, support and the benefits you are entitled to. You can also call the Carers Direct helpline on 0300 123 1053.

Autism spectrum disorder (ASD) is a condition that affects social interaction, communication, interests and behaviour. It includes Asperger syndrome and childhood autism.

Some people also use the term autism spectrum condition or ‘neurodiverse’ (as opposed to people without autism being ‘neurotypical’).

The main features of ASD typically start to develop in childhood, although the impact of these may not be apparent until there is a significant change in the person’s life, such as a change of school.

In the UK, it's estimated that about one in every 100 people has ASD.

There is no 'cure' for ASD, but a wide range of treatments – including education and behaviour support – can help people with the condition.

Read more about treating autism spectrum disorder.

Signs and symptoms

ASD can cause a wide range of symptoms, which are often grouped into two main categories:

  • Problems with social interaction and communication – including problems understanding and being aware of other people's emotions and feelings; it can also include delayed language development and an inability to start conversations or take part in them properly.
  • Restricted and repetitive patterns of thought, interests and physical behaviours – including making repetitive physical movements, such as hand tapping or twisting, and becoming upset if these set routines are disrupted.

Children, young people and adults with ASD are often also affected by other mental health conditions such as attention deficit hyperactivity disorder (ADHD), anxiety or depression.

About half of those with ASD also have varying levels of learning difficulties. However, with appropriate support many people can be helped to become independent.

Children with more severe symptoms and learning difficulties are likely to need more additional care and assistance to live independently as adults, although there is no reason why they and their families cannot enjoy a good quality of life.

Read more about the symptoms of autism spectrum disorder.

Getting a diagnosis

Autism features can often be recognised in children before the age of two or three years. However for many, the signs will often only become more noticeable as they get older.

See your GP or health visitor if you notice any of the symptoms of ASD, or if you’re concerned about your child’s development. You can discuss your concerns together in depth before deciding whether your child should be referred for specialist assessment. It can also be helpful to discuss your concerns with your child’s nursery or school.

Adults can also be diagnosed with ASD. See your GP if you are concerned. They may use a screening tool to check if you have signs of ASD and they can refer you to appropriate services in your area.

Read more about diagnosing autism spectrum disorder.

What causes ASD?

The exact cause of ASD is unknown, but it is thought that several complex genetic and environmental factors are involved. In some cases, an underlying condition may contribute to ASD.

In the past, some people believed that the MMR (mumps, measles and rubella) vaccine caused ASD, but this has been investigated extensively in a number of major studies around the world, involving millions of children, and researchers have found no evidence of a link between MMR and ASD.

Read more about the causes of autism spectrum disorder.

Autism in adults

Some people with ASD had features of the condition as a child, but enter adulthood without ever being diagnosed. However, getting a diagnosis as an adult can often help people with ASD and their families understand the condition and work out what kind of support they need.

A number of autism-specific services are available to help adults with ASD find advice and support, get involved in leisure activities and find somewhere they are comfortable.

Some adults with ASD may have difficulty finding a job because of the social demands and changes in routine that working involves. However, they can get support to help them find a job that matches their abilities and skills.

Read more about adults with autism spectrum disorder.

Page last reviewed: 18/12/2013

Next review due: 18/12/2015


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The 25 comments posted are personal views. Any information they give has not been checked and may not be accurate.

I want answers said on 27 September 2014

Apparently we have had a miracle in the uk and it has not been reported on MSM due to the revision of the ICD(10) Sept 2014 and the new ASD triad all Aspergers,PDD NOS ,and Atypcal have been cured and do not have these difficulties any more.As l cannot find any provision made to diagnose these conditions on the IDC(10) or the NICE UK. So l can only perceive that these conditions are not going to be recognized in the Health Service and Education, for children or adults.Therefore the packages and support that went with the diagnosis of the above conditions, have also disappeared.This is a very worrying aspect for all Parents and Carers and worthy of great debate on this subject.And the NHS needs to step up and inform everybody why these diagnosis's no longer are on the ICD(10).

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purplemonkeydishwasher said on 04 September 2014

I'm shocked to see such ignorant and biased information on an nhs website! First of all autism is 100% not environmental and never caused by an "underlying condition". What are they trying to imply? Its caused by poor parenting and abuse?! And why is all this advice for parents with autistic kids? Adults suffer from it too ya know! You dont "grow out of it".

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carlamc1 said on 22 July 2014

I don't understand why you are still with this GP if you are dissatisfied ?
move, get a second opinion
get your health visitor to write a letter of support.

doctors are like any other service ie we are not bound to adhere to their advice and we must remember that like any other service if we are not satisfied we move on
we must remember also that the vast majority are working for our best interest but there will always be few who have their own opinion..... move !

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dillingersmum said on 21 July 2014

i took my 3 year old (he is now 4) to see our local gp several times because our health visitor kept telling my self and partner that he needs to see a dr about asd, when i took him we got turned away every time and was told there is nothing wrong with him he's just shy, the last time we went to see the gp he agreed to send to him to see a paediatrician we got the appointment but a week before the appointment the paediatrician cancelled and sent my son back to the gp. we are now being told by our health visitor that the gp can't refer him again to the paediatrician as they won't accept his case again, what can we do now? our health visitor was a nurse and says she is 98% sure he has high functioning autism, but we are not getting the help we need, seem's everyone else who doesn't need help gets it. i'm not moaning by the way, just annoyed with the nhs system

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Kathryn at NHS Choices said on 21 May 2014

Dear Skarletk,

The original research by Andrew Wakefield into MMR and autism has since been completely discredited and he has been struck off as a doctor in the UK. All studies over the past decade, including many independent ones, have found no link between the MMR vaccine and autism.

The most recent study, of more than 1 million children, once and for all dispels any connection between vaccination and autism. Read about it here:

Best wishes,
Kathryn Bingham, editor of NHS Choices' vaccination guide

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Win D said on 22 October 2013

I was looking for help re my husband, an adult aged 75 with non-diagnosed Asberger's syndrome, and found nothing.

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Grannybee said on 25 August 2013

I am searching for help for my two year old grandaughter she is having what we think night terrors she is inconsolable when they start , she is a very clever little girl ..she could count to ten by 13 months ..count to 10 backwards by 16 months and also knew all her colours etc by 16 months ..she has a very good memory fact the nursery that she started not so long ago was shocked they shown her photo's on the wall of all the kids and there names then within an hour she returned to the wall and named everyone after only being told once .. But she has a problem with concentration she can't stay on one thing for longer than a couple of minutes and can't sit still in a chair or car seat without holding her breath and tensing her body and rocking started when she was 9 months old and getting no better, she is over the last few months started with what we think is night terrors she has a bed time she has a story and goes to bed every night at 8.30 after going to the toilet , she sleeps in a bed and has since 13 months old and the room has to be dark and nobody in with her ..she then wakes at around 11.30 -12.30 with screaming uncontrollable screams and gets her self out of bed pulls off all the covers and sheets and is throwing her self round the bedroom screaming mummy even though mummy is with her and is saying mummy is here darling she don't hear her due to her loud screams ..she can then become very violent kicking , scratching and even head butting the wall ..her dad has actually been attacked an his back been scratched to bits ..then after between 10 minutes to an hour she will settle her self down and mummy shall we take you to the toilet she will go and then back to bed without even knowledge she has just had this attack and sometimes it can happen again after an hour or so ,but not always . , she also eats books , paper, nursery have had to move the from her.

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Skarletk said on 18 July 2013

This is very biased when it come to the MMR.

They failed to mention that the drug companies that created the MMR fund the studies that show there's no evidence to link the drug to autism. What about the independent studies that show there is evidence that links the MMR to autism? Try researching your topic before making statements! This does not give people enough information to help people form opinions.

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Chaosnecron said on 15 July 2013

How do you go about getting diagnosed? I've always had trouble in social situations, I've never been able to keep friends, and often I find myself not being able to cope with my emotions in a socially acceptable way. I'm 20 now and I've always had this problem, ever since I was younger.

I get obsessed with collecting things, and I always feel awkward if my routine is disrupted in anyway way. All my friends have been older than me and I struggle with keeping friends me own age or I'm just not interested in them...

I need help. It's destroying my life not knowing why I've always been this way.

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AddictedToOnlineShopping said on 28 February 2013

I have always known there was something different about me. I've always suffered badly with anxiety and depression, and tend to get obsessed with things (atm it's knitting), when I find a new obsession I drop the last one, and this is how I have been for as long as I can remember. All my friends and family always said I just gave up things and became bored of them easily, but I don't I just don't have time for them or the energy to think of them when my new obsession comes along. I have certain ways of doing things and if something is done wrong I have to start again. I have a night time routine that I have to do and if I don't I can't settle and get to sleep. I am extremely clumsy and was diagnosed with dyspraxia by a learning mentor in high school. I cannot look people in the eye and cannot hold conversations properly unless it is a factual topic (like a discussion about algebra, where all that can be said is pure fact.) I cannot read fiction easily but love my non-fiction books. I find it hard to imagine things and always had much more fun playing on the trampoline or swing as a kid than I did playing "mums and dads" and other imaginative games. I am also extremely arty and enjoy copying pictures (like drawing a picture of a cartoon character off a paused image on the tv, or drawing a picture from a book but enlarging it) I find it difficult to get inspiration to draw my own pictures. And once I get started talking about one specific topic I cannot stop or change subject until I have said all I have to say. More recently though my mum came home from an Autism awareness course (she works with children) she told me she thought I was autistic, as it does explain a lot. I have spoken to the doctor and am now being referred for a formal diagnosis. I am 20 years old and am scared at whether a formal diagnosis is going to be a good thing or not. I don't want things to change too much or people to treat me differently.

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Ben012 said on 05 November 2012

I was recently diagnosed with Autism Spectrum Disorder at the age of 40. I had always know that something was different about me, but couldn't put my finger on what it was! I was severely bullied at school back in the 80s and had been labelled as 'slow' and 'painfully shy' by teachers and other pupils! My family knew that I was autistic 17 years ago, but kept it from me! Now, I feel pretty bitter towards them that they did this!

I've only had 3 relationships in all of my life, and am on the DLA, which I'll probably be on for the rest of my life! I've never had long-term consistent work, and have fared mostly badly in job interviews! I have decided recently that I wish to become self-employed and sell my artwork (being an artist)! It's something that I'm very interested in, and I'm not answerable to anyone else, being my own boss!

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name submitted said on 05 July 2012

As someone with aspergers I can only say how bad the health service are at treating people with the condition.

You are treated as sub normal or a trouble maker.

As the condition involves not being able to understand non verbal communication and taking things literately surely medically trained staff should be more understanding.

Aspergers can be difficult to cope with if you are unaware of the condition or how it affects people. However professionally trained staff should be aware and capable of spreading a little more time explaining things and not deal with innuendos and jokes when dealing with people with conditions that limit their abiity to understand the nuances of what is being said

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MrsJRhodes said on 28 April 2012

I was informally diagnosed with Asperger Syndrome aged 16, then formally diagnosed with it aged 20. I noticed I had symptoms when somebody told I had a tendency to be rude and offensive to people- something I hadn't noticed. I looked closely at my behaviour and realised that I showed all the classic symptoms of ASD. I then went to my GP, who referred me to a clinical psychologist who diagnosed me with Asperger Syndrome. Since then I've faced abuse and have been called a liar many many times. It hurts to be called a liar, particularly by a student nurse, but I know that I was told the truth by a qualified professional.

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Sba 77 said on 16 April 2012

Well i'm 19 and i swear i've got aspergers syndrome, when i was 16 someone thought i had it, and other people have thought i had it, plus i've just realized today i've got loads of the symptoms. When i was 16 i went through a really bad patch of feeling depressed and suicidal, recently i feel lonely, had insomnia really bad, cause of all the problems, stress, crying, my dad knows i dont have any empathy and thats a big symptom, and the friend thing is bad cause i only have one decent one so have had difficulty with that, and the one which has been bothering me recently, i'm sexually frustrated. and feel more down cause i've gained weight, got exams soon haven't even started revising cause i've been down and had no motivation so worried about that, so yeah. and worried about money. worried about everything and stressed. plus got nobody to talk to and i find it hard to talk.

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The lady who cried a lot said on 21 December 2011

I havent been formally diagnosed with it yet, but I realised I had it as soon as my son was diagnosed, I kept thinking "I did that" about everything the doctor was saying. I tried to get diagnosed formally because I want the bullying to stop. I got put in a childrens home after being abused and have been bullied because of it and am still being bullied now. I really would like the bullying to stop so much and I thought if I could get a proper diagnoses and get a piece of paper I might be able to stop them bullying me. The doctor sent me to a clinic but they said they couldnt do the diagnosis there as it wasnt a learning difficulty that I had. I did a self diagnosis twice and both times I got 40 out of 50, it was the Cambridge test. I really wish I could get a formal diagnosis, so that I could make them stop bullying me and calling me a nutter all the time.

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The lady who cried a lot said on 21 December 2011

I get bullied quite a lot because I was abused as a child, I think I was an easy target. I used to cry a lot but dont much these days. A community nurse helped our family a lot, when my son was diagnosed. That was 10 years ago. I thought my son was just healthy and lively, but he was running round and round all the time, because he was obsessed with wheels. He used to stare at wheels on cars, and run round and round. Some people think that is funny, but its not. I hate beind called a nutter all the time and wish people could be more kind. My son is in a special school, he was getting into trouble all the time in mainstream, he loves his school where he is now though and is doing really well. They are all disabled in some way, so theres less bullying, and the kids seem really happy. Its a shame you have to send them to special school, but its terrible to get bullied.

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The lady who cried a lot said on 21 December 2011

Its a relief when you do get it diagnosed. I had a bad time as a child. I felt like an alien. My son has been diagnosed with it, and other members of our family. I didnt think there was anything wrong with him, because of other people in the family with it, to me its normal but other people called us "nutters", which is very unpleasant and unkind. I cant see anything wrong with me but apparently according to other people I am weird. You can get tricked by people with bad intent if you have Aspergers Syndrome. I used to be obsessed with ballet, and people got sick of it, of me talking about it all the time. I didn't realise how boring I was to other people, and was very upset when I realised what other people thought about me. I know one man with it who used to hoard things, and you could hardly get in his house, but he knew where everything was. I had to help him tidy up his house, which was very hard work.

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phayes said on 03 May 2011

One of your external links is to Autism Independent UK. Recently I had cause to have a look at that organisation's website and found among its pages some very worrying features. For example, I found links to a website associated with the notorious DAN! quackery (broken as it happens) and to the anti-vaccine JABS organisation's website. The link on AI UK's front page, “Vacines [sic] Fact Sheet”, leads not to a vaccine fact sheet at all, but to a page advertising the services of a law firm specialising in accident and injury cases!

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suewell said on 04 September 2010

Unfortunately life is not always as simple as a straight forward diagnosis that most of you have had good fortune to recieve. My son is now 9 years old, at 5 after 2years of seeing professionals he was given the NAD-DOS diagnosis which means he has some sort of disorder but they cant put him into any bracket because somethings like motor skills are ok and other things like learning skill, emotionally void, verbal skills and memory retention are not. He never used to make eye contact but years of holding his chin softly up when he responds to me has taught him to raise his eyes and eyebrows and look at people from a head down possition. He can walk backwords, play catch allbeit clumsily and ride a bike with some ease all through myself and my husbands perserverance. A far cry from the little three year old that could not talk, screamed all the time and would wonder up the street with a nappy on if the door was left unlocked, we suffered fires in the house at 4yrs through his facination with fire ( plugged in a toaster behind the sette and filled it with lego and paper, popped a car in the microwave and pressed the buttons) years later he still rocks himself to sleep and sings loudly every night. His learning difficulties have become more apparent and he is 5.5years average at school. Our problem is we tried to get him reasessed at the age of 7years feeling that he had settled into himself we might get a propper diagnosis, the doctor/ specialist who saw him at our doctor surgery declared he was not NAD-DOS and just had learning difficulties. My worry is that he is slipping through the net, that he has an entitlement to have support that he cannot access without a proper diagnosis and that later on as he becomes an adult how will he cope with life as a parent I would like to think he will be able to function indepedently in society, But with no support I cant see him deveolping past what we as parents can offer him.

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caz11 said on 30 June 2010

I have spent 9 years looking for a diagnosis for my son. He was diagnosed as having emotional behavioral problems for years but we knew there was more to it. Eventually a school psychologist tested him and told us that she was 99%sure that he had aspergers. It took another year for the so called professionals to admit that there was more to his condition than emotional problems. However, although I was given a diagnosis of asd, it was stressed that this diagnosis was only given to me to keep me happy and I was sent on my merry way!!! I have received no support at all and I feel that my son has been denied treatment just because they were too slow to pick up on the clues. I would like to know if cutting out sugar and other dietary products may help my son as his behavior can be off the wall at times and he flies into rages. Frustrated in Ireland

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sega111 said on 12 May 2010

i have Highfunctioning autism (asperger syndrome) and my life has been stressful and little horror but at the same time enjoyable. ive been diagonsed with Autism at the age of 10 along with ADHD (ATTENTION DEFLICT HYPERACTIVE DISORDER). ever since secondary school i found it hard to cope for a while but i hav a lot of support from my autistic centre the st werburgh centre and now im more indipence and more sociabal than i used to be. i hardly have much struggle wth it now but still struggle with some parts such as routine a little but i learn to get on with it.
not bad for someone at 15 years old

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Pat101 said on 23 April 2010

I have a son on the Autistic spectrum, Aspergers / high functioning end, yes he likes order and structure, and we try to make everything just so for him but he also needs to understand that life is not structured and ordered, things have to be changed at short notice, we try to introduce changes at short notice, so that he can cope with lifes changes when he is an adult. I wish we could have been given more information after he was diagnosed, rather than he has ASD; then nothing we were left in a void not knowing how to help him. we found supportive parents very good and the local NAS branch a great help. These services need to be sign posted, as a way of getting much needed support after diagnosis, not just left in limbo.

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KLExx3 said on 27 February 2010

No Dansma your not deluding yourself love, his behaviour can improve with the correct support, the extent of which will depend on what type of ASD he has, the level to which he is affected and the way in which he is supported. I've seen first hand that often parents aren't always fantastic at dealing with their children's ASD's however well meaning they are. It is important to not always put behaviour's down to their condition, in the case of children with Asperger Syndrome for example, who in most cases are perfectly capable of following instructions, once they have grasped the meaning of them. Don't make excuses for your child's behaviour, a child with autism must still be told what they are doing is wrong, if in fact it is so, otherwise they will never be able to understand that their behaviour is unacceptable.
A great way to help achieve more desireable behaviour is through token economy. Reward your child with small tokens when they have done well at something. i.e. a gold star on a chart with a prize/ activity when they have reached a certain goal. This visual aid tends to work very well, and helps the child to understand more clearly as he can recognise that things have a structure (children with ASD's tend to love order, structure and routine). Constant praise when the child has done something correct is another way of focusing on desirable behaviour, and encouraging this. Routine can also be another way to help your child, create a visual chart with pictures of his day, i.e. meal times, school, bed time, etc. This will help your child recognise the order and what is going to happen during the day, so he will be less confused and afraid when moving from one situation to another.

I hope this has helped somewhat, feel free to ask anything else you need to know =) I'll try my best to help.

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JayWalker said on 04 February 2010

Why do reference sites always assume autism only affects children? Just once, I'd love to see something about the impact it has on adults. Just because our generation were written off as "idiot savants" doesn't mean the issue can't be addressed now.

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dansma said on 03 February 2010

my son has just recently been diagnosed with ASD in the weeks before his diagnosis his behaviour (just like the flip of a switch) changed. he understands a lot more of what i tell and ask him. he doesnt cry as much and is much easier to calm down when upset. he will be 4 in april.i know he is diff from other kids his age but i have great confidence with the proper tutouring he will improve tremendously. am i deluding myself?

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