Diagnosis: the process for children

How to get an autism diagnosis for your child, from the first steps through to the assessment itself, and what to do afterwards.

Does my child have an ASD?

"Before diagnosis some parents will doubt their own abilities. They may struggle to understand why things that worked for their previous children are not working now, or why something that worked for other parents doesn't work for them; or they may think they are no good at being parents. These are common thoughts but we know for certain that ASDs are not caused by bad parenting." Williams and Wright, 2004

ASDs can normally be diagnosed at around the age of two. In many instances professionals may spot the tell-tale signs of ASD via the normal childhood health checks and this will eventually result in a child being formally diagnosed.

Although a child may show signs of ASD early in life, the condition can go undetected for some years, especially in those who are more able and where the signs are more subtle.

If you think that your child has an ASD, but are not sure, you may find it helpful to read our leaflets What is autism? and What is Asperger syndrome? They are available from our Autism Helpline (0845 070 4004) and online:

• What is autism?: www.autism.org.uk/autism
• What is Asperger syndrome?: www.autism.org.uk/asperger

If you feel that there is a possibility that your child has an ASD, go to your GP and ask that they refer your child to a consultant or diagnostic team with a good understanding of the condition.

Getting a referral to a diagnostician

When you visit your GP to ask about a referral, it can help to take along a list of behaviours and characteristics that make you suspect your child has an ASD. This can act as a good prompt during your appointment.

If your child is pre-school your health visitor or GP may carry out a screening interview called CHAT (Checklist for Autism in Toddlers). You can see a copy of this on our website: www.autism.org.uk/chat  CHAT will not give you a diagnosis, but it can help to identify behaviours that indicate your child may have an ASD.

Once your GP is convinced of your child's difficulties, s/he should refer you for an assessment appropriate for any child with a possible developmental problem. It does not matter what age your child is.

My GP refuses to refer my child on

Due perhaps either to financial constraints or lack of knowledge about ASDs some GPs are unwilling to refer people on. Unfortunately you have few legal rights in this situation. Under the Patients Charter you can ask to see a consultant of your choice or seek a second opinion if you are dissatisfied with the first, but only with the agreement of your GP. However, being assertive and persistent can help. You might also find the following tips useful:

• prepare notes on what you want to say to your GP prior to your appointment
• keep a diary to record any unusual behaviours exhibited by your child and their frequency
• give your GP some NAS information on ASD or encourage them to contact our Information Centre (tel: 0845 070 4004, email: nas@nas.org.uk) if they have any specific questions
• if your GP is part of a group practice, ask to see one of the other doctors.

Who will diagnose my child?

There are a number of different health professionals who may be involved in diagnosing an ASD. Most frequently these would be psychiatrists, clinical psychologists and, in the case of children, paediatricians. In some areas there may be 'multi-disciplinary teams' (teams made up of a number of different health professionals) involved in diagnosing autism. It is important to make sure that whoever sees your child has a good knowledge of ASD.

Ideally, your child will be diagnosed by a multi-disciplinary team. These professionals can help establish what is causing your child's difficulties - be it an ASD or something else. The essential components of such an assessment are set out in the appendix at the bottom of this page, and are taken from the National autism plan for children, which sets out guidelines and recommendations.

However, there may not be a multi-disciplinary team in your area. If your child is referred to an individual professional, it is important that the professional is experienced in diagnosing ASD.

My GP is willing to refer my child on for a diagnostic assessment but does not know of any people with the relevant expertise

Our Autism Services Directory (www.autismdirectory.org.uk) lists professionals who have told us that they are experienced in diagnosis. Many of these diagnose as a member of a team. You can search the Directory or call our Autism Helpline, who can search for you.

Private assessments

Some parents feel that they would rather pay to see someone privately. This can reduce the amount of time that the family have to wait for the assessment to take place. Costs can vary. It is a good idea to phone a number of services to ask about costs, what this pays for and whether any follow-up service is offered.

There are occasions where local authorities, such as the social services department or the local education authority, have not recognised a private diagnosis. We suggest that you try to get a referral through your GP and stay on the waiting list for an assessment, even if you do decide to pay privately, to avoid any future disputes.

What to expect on the day

"The process of getting a diagnosis was pretty straightforward, which was good - several assessments and then diagnosis." Parent

Local professionals will have different procedures for assessment after the referral by a GP. In the areas where a multi-disciplinary team carries out separate assessments, the assessments are brought together by the team leader. In some areas, you may only see one professional. Assessors may use a variety of diagnostic 'tools', checklists and observations to make their diagnosis.

The National autism plan for children (NAPC) recommends that other assessments, as well as a developmental history, are carried out at the time of diagnosis. See the Appendix at the end of this page for more details. Some or all of these may be carried out during your child's assessment because the NAPC is only guidance, not law.

The diagnostic report

It is hoped that a diagnostician or diagnostic service would provide you with a detailed report containing their findings and recommendations for support. It is important that the diagnosis is clearly stated. Phrases such as 'has autistic tendencies' are not very helpful because they imply that the child does not have an ASD. This can cause problems when trying to access ASD-specific support. Sometimes the report is given at the end of the assessment, at other times it is typed up and sent later.

Medical professionals can sometimes presume patients understand the medical jargon that they use. If you do not understand any part of the report or anything that the professionals say to you during the assessment, ask for clarification. You can call the the diagnostician's office after the assessment if you need to. 

If you are unclear about what you read in the report you receive, you may also find it helpful to read the article that Lorna Wing has written which helps to explain diagnostic labels. It can be accessed at www.autism.org.uk/labels or by contacting our Helpline.

Some professionals offer follow-up support. What this includes varies, depending on the service. Sometimes it can be regular visits to monitor your child's progress, while with others it is simply telephone advice.

What next?

"After getting the diagnosis I didn't know where to turn next. The advice I got from the doctor who diagnosed Megan was to read a certain book and watch a certain film and that was it. No other advice or information was given to us. They just told us we were doing a good job and just told us to continue what were doing. We joined a support group and they were a great source of information." Parent

Receiving a diagnosis of ASD can be a relief for some parents, but for others it is a big shock. In either case moving on from a diagnosis can seem daunting and many people wonder what to do next.

You may find our booklet, After diagnosis, useful. This tells you about the services and support that are available to children with an ASD and their families. Follow the link to our online shop at the bottom of this page.

We provide an online service called Signpost (www.autism.org.uk/signpost). After you have entered some basic information about your child and their diagnosis you will get personalised information relevant to your child's age, diagnosis and the area that you live in. This can be a starting point for accessing support from the local authorities and for meeting others in your area with a child with an ASD.

We also run four support programmes: EarlyBird (for parents of children under school age), EarlyBird Plus (for parents of children aged 4-8), help! (for parents of children of school age and above) and help! 2 (seminars focusing on ASD-related topics).

"After receiving the diagnosis we felt a bit better. It was a relief, because we could actually say he was autistic. It was a relief to actually be able to use the diagnosis." Parent

Appendix

National Initiative for Autism (2003). Screening and assessment: national autism plan for children (NAPC). London: The National Autistic Society. Download from: www.autism.org.uk/napc

Essential components for a multi-agency assessment (page 11).

1. Existing information from all settings should be gathered.
2. A specific ASD developmental and family history should be taken. No evidence exists on which to recommend any particular framework, but this history should be taken by an experienced team member with recognised ASD training. In some cases it may be useful to use a semi-structured interview such as the Autism Diagnostic Interview (ADI-R) or the Diagnostic Interview for Social and Communication Disorders (DISCO). If the person taking the developmental history is not medically trained, then the medical history and examination should be completed separately.
3. Focused observations should be taken across more than one setting. This could include tools such as the Autism Diagnostic Observation Schedule (ADOS). The focus of the assessment of primary school aged children should include their functioning in an educational setting.
4. A cognitive assessment should be performed in an appropriate setting by either a clinical or an educational psychologist with ASD training.
5. A communication assessment should be made and speech and language competences assessed where needed by a speech and language therapist with ASD training.
6. An assessment should be made of mental health and behaviour. Co-morbid mental health and behaviour problems are common.
7. An assessment of the needs and strengths of all family members should be undertaken.
8. A full physical examination should be performed including appropriate medical tests.
9. Choice tests will depend on each childs clinical presentation but chromosome karyotype and fragile X DNA analysis are the only current routine recommendations (Grade B). Clinical evidence of co-morbid medical conditions such as epilepsy should be sought but tests such as EEG not undertaken unless clinically appropriate. The evidence base for all investigations should be fully explained to parents.
10. Other assessments may be required to investigate unusual sensory responses, motor planning and co-ordination difficulties and self-care problems.

Also in this section:

Related resources

• After diagnosis Code: NAS 844 £0.50 excl. vat £0.50 incl. vat