Autism spectrum disorder - Diagnosis 

Diagnosing autism spectrum disorder 

Autism spectrum disorder: Graeme’s story

Graeme took a dyslexia test at the age of 24, which showed he had signs of autism. He describes how he was finally diagnosed with Asperger syndrome and what the diagnosis meant to him.

Media last reviewed: 22/02/2012

Next review due: 22/02/2014

In most cases, parents notice the symptoms of autism spectrum disorder (ASD) when their child is around two or three years old.

In some instances, mild cases may not be detected until adulthood.

Diagnosing ASD in children

If you are worried about your child's development, visit your GP. If appropriate, they can refer you to a health professional or team who may specialise in diagnosing ASD, or someone who has access to such a team. They will make a more in-depth assessment.

This health professional may be:

  • a psychologist – a health professional with a psychology degree, plus further training and qualifications in psychology
  • a psychiatrist – a medically qualified doctor with further training in psychiatry
  • a paediatrician – a doctor who specialises in treating children
  • a speech and language therapist – a specialist in recognising and treating communication problems

Some local health authorities now use multidisciplinary teams. These are made up of a combination of professionals who work together to make an assessment.

Assessment

There are no individual tests to confirm a diagnosis of ASD, a diagnosis is instead based on the range of features your child is showing.

The type of assessment carried out often depends on things such as access to additional information (for example nursery or school records) and the skills of the professional or team seeing your child.

A detailed assessment for ASD may or may not be required. If one is carried out, this will involve a number of steps, which are explained below.

For most children:

  • Any existing information about your child's development, health and behaviour may be sought from relevant people, such as your GP, nursery or school staff.
  • A detailed physical examination will be carried out to rule out possible physical causes of your child's symptoms, and some children may be referred for further tests, such as testing their blood for genetic conditions with similar features to ASD.

In addition, for some children:

  • You may be asked to attend a series of interviews so a detailed family history and the history of your child's development can be drawn up.
  • Your child may be asked to attend a series of appointments so that specific skills and activities can be observed and assessed. This is known as a focused observation. Focused observation looks at language, behaviour, the pattern of your child's thinking (known as their cognitive ability) and how they interact with others.

Once this process is complete, a diagnosis of ASD may be confirmed. If a diagnosis of ASD is not confirmed during an assessment, but your child later develops more significant signs of the condition, a re-assessment may be carried out.

After diagnosis

Parents may react in different ways when ASD has been confirmed. Some parents feel relieved because they now understand the reasons behind their child's behaviour and can begin to treat them.

Other parents feel an immense sense of shock and disbelief, as they are naturally worried about what the diagnosis means for their child's future.

However, the diagnosis offers an insight into your child's individuality and personality. In turn, it gives you a chance to guide their development and growth.

When a child is diagnosed with ASD, many parents are keen to find out as much as they can about the condition. The National Autistic Society has an excellent range of resources and advice on its website.

You can also the read the National Institute for Health and Care Excellence (NICE) guidelines on diagnosing autism in children and young people and managing autism in children and young people.

Diagnosis of ASD in adults

Some people with ASD grow up without their condition being recognised. But it's never too late to get a diagnosis. Some people may be scared of being diagnosed because they feel it will 'label' them and lower other people's expectations of them. But there are several advantages.

Getting a diagnosis of ASD will help people with the condition and their families understand ASD and decide what sort of support they need. A diagnosis may also make it easier to access autism-specific services and claim benefits.

See your GP if you think you may have ASD and ask them to refer you to a psychiatrist or clinical psychologist. The National Autistic Society website has information on the process of being diagnosed with ASD for adults.

If you're already seeing a specialist for other reasons, you may want to ask them for a referral instead. However, some local NHS authorities do not provide NHS funding for diagnosing ASD in adults.

Read more about diagnosing autism spectrum disorder in adults and advice for adults with autism spectrum disorder. You can also read the NICE guidelines on the recognition, referral, diagnosis and management of adults on the autism spectrum.




Page last reviewed: 18/12/2013

Next review due: 18/12/2015

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The 8 comments posted are personal views. Any information they give has not been checked and may not be accurate.

Hari P said on 19 September 2013

I identify so much with some of the comments below. Two years ago my son was diagnosed with high fubnctioning autism and during the appointment we found it was hereditary and the paedriatrician wne to n to explain the importance of early detection and the problems in adults with undiagnosed aspergers/autism. I realised this was me, having suffered a horrible childhood bullied and depressed t achool and even now struggling to socialise and cope with groups, especiallly cliques. I have left college courses and clubs/societies due to this inability to feel included by others. Only a few years ago I found my paresnts had been offered for me to see an educational psychologist at school but they refused it - leaving me angry with them as I realise the school musy have thought I needed help then. I am not exaggerating in saying this has all had a devastating impact on my life, and at 41 I have spent 20 years being given anti depressants that have failed to work as they do n ot address the root cause of the problem, which my husband and I are 99.9% certain is aspergers. I did well academically but learnt differently from otheres according to my tutors at university.

I asked my GP for referral, armed with lots of research and evidence, gained in part from a lenghty discussion with the NAtional Autistic society. I cannot afford a private assessment, as I have been busting a gut to hold down full time work and now I can see why. However, in despair when yet again she refused to refer me, I rang a private specialist, who said I warrant investigation considering all that I told him.

My GP continues to try and refer me to the wrong people, and during our last encounter in May this year, because I wasn't playing along with her little moeny saving exercise of just taking the pills, which were just not working anyway, washed her hands of me. My husband was also at the appointment as he felt she'd browbeaten me long enough, and he was frankly disgusted with her attitud

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Chaut123 said on 19 March 2013

Please be wary of accepting a diagnosis of ASD as some PCT use this to implement a protocol which means the withdrawal of any support you or your child may have been receiving such as speech and language therapy. Basically children with autism are seen as a lost cause and therefore PCT will divert resources to more 'worthy' causes.

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Jeff84 said on 12 February 2013

I've always had a difficult childhood and always felt completely different to other kids and never really known why. Now I'm 28 and still finding things difficult particularly with jobs, socializing and anxiety, so I started reading around and came across Asperger Syndrome and pretty much all the symptoms matched perfectly.

So I started reading lots more and watching YouTube videos for months, so finally I went to my GP after telling him my issues he said it would have been picked up and diagnosed when I was a child, so he just and sent me away with some anti-depressants which didn't help at all, so I went back and asked again and basically got the same response, so I decided to switch GP.

At the new GP I told him my issue and finally got a diagnoses booked strait away, so me and my girlfriend went to the psychiatrists he asked me a lot of questions that only my mother could really answer, I would have taken her but I didn't know what to expect, I should have read about it first what an idiot!

Anyway it seemed like he just wanted to get me out the door asap, while asking me questions it appeared he wasn't listening or writing what I was actually saying and at the end he said there's no trace of Asperger Syndrome at all! I was shocked! Then he said If anything I have Borderline Personality Disorder so after I got home I had a read about it and I don't agree with what he said at all I actually think it's complete rubbish what he said, so this Thursday I'm going back to my GP and I'll request a second opinion as I'm 99.9% sure I've got it.

I agree with what you're all saying, I know how I feel I've spent my whole life like it and the cheek of some random guy in 40 minutes is going to tell me something different, it's socking! And these people claim to be helping you they just making life harder. Just seems to me there first option is to slap you with anti-depressants and they'll say anything to stop you getting the support and benefits you need.

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Dramlouie said on 04 November 2012

I have contacted doctors and even the social services have come round about my husband but nobody will help me. I am sure he has something wrong and after putting up with it for 25 years I am coming to the end of my tether. I have asked him to leave on numerous ocassions but he won't. I don't have the money to get him out but don't want to leave as I have nowhere to go and the house is in my name but it is affecting me and the children. He has no eye contact, he hoards, lack of empathy, doesn't like change, he makes all the excuses not to take us on holiday, he finds it difficult to start a conversation, he pretends he is tired at Christmas and stares into space, he gets fixated with things, his finger draws in the air, he is always buying stuff he doesn't need, ie highland dress, saxophone, he talks to himself, he drinks heavily, can't say sorry, good at maths, he gets cross if anything goes wrong, watches tv addictively, one minute laughing then he gets angry. I have been to doctors but they just prescribed me with anti-depressants. I managed to get two hugs from him when my Dad died recently, he never asks how my Mum or family are. If he does anything around the house he makes a hash of it, either breaks something or knocks over the paint tin. Very volatile temper. Says more and is kinder to animals than to his family. He can put on a facade when he wants to, when the social services came round as our son had said that his Dad makes him sad at school, my husband behaved totally different and made out that it was me. What do I do, I have lots of nice friends so I am sure its not me although sometimes he makes me feel its all my fault. He always has an answer to everything I say and turns things around in a illogical way to make it my fault. I feel I am going nuts sometimes. So where do I go now, the doctors say he has to get help himself but he thinks he is normal. I have gone to numerous counsellors who just sit there nodding their heads, any ideas

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phoe said on 22 August 2011

"Note that some PCTs do not provide NHS funding for diagnosing ASD in adults"

Therein lies the problem - i've been trying to get an adult diagnosis for two years, and despite being told "yes, it's aspergers" by the consultant psychiatrist of a specialist adult learning disability centre, he can't put it down as an official diagnosis because there's nothing in my PCT area to allow that.

I was only referred to the psychiatrist when I approached my GP with a letter from a neighbouring PCT who you could self-refer to, asking for £2000 up front to diagnose, because I wasn't in their area.

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johnbishop said on 31 May 2011

Perhaps they should change "to understand what's wrong with them" to "to understand what's wrong with everybody else"! It does seem that people seem to struggle coming to terms with the fact that not all people are the same and not all people subscribe to the same set of social rules and motivations. As was argued in George Orwell's 1984, sanity is not statistical.. it is an absolute, and whether 99% or 1% of people think something is wrong mentally with a person, it proves nothing. We are not in a position to judge whether people with aspergers syndrome have something wrong with them, or whether all the rest of us have something wrong with us.

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DympnaF said on 04 February 2011

You have got to change the wording "to understand what's wrong with them" to "what's different about them"!

Whether you believe that God, or evolution created the design for a human being, it is less than 150 years since kids all went to school, and so short a time in human history that all were expected to be National Curriculum clones.
It's like expecting everyone to be opera singers; sounds daft, but neither lengthy formal education nor singing Nessun Dorma can be considered "natural".

"Wrong" is a horrible word in this context.

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ms_cellany said on 23 August 2010

Most people I know have had to fight for years to get a diagnosis! By which time the additional issues ensue because support was not given at appropriate times! Also people don't get referred on for diagnosis because G.P's dismiss Asperger Syndrome as a mere 'label'. It's time to stop G.P's playing god with peoples lives!

Asperger Syndrome dramatically impacts on our lives and the way we function. It is a significant impairment, made no less significant by the fact that it is hidden! Blindness and deafness are also hidden disabilities G.P's would not dismiss them as 'labels'

G.P's also used to dismiss eating disorders as mere attention seeking but they wouldn't dare do that these days!

Dale Yaull Smith

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Daniel Bullen

Autism: child diagnosis

Autistic spectrum disorders can normally be diagnosed at around the age of two years

Max Horne

Autism: adult diagnosis

Why you may want a formal diagnosis of autism, how to approach your GP and the benefits of being diagnosed.

Talking to your child about their autism

Dr Glòria Durà-Vilà explains why it's important that a child hears about their autism diagnosis from a parent in a safe environment