If you think your child may have autism and you are being sent for a diagnosis, here's what you can expect to happen on the day and soon after your appointment.

What to expect on the day

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

The process of diagnosis will vary depending on where you live. There isn’t one standard way for an assessment to be carried out, but there are guidelines that professionals should be following such as those issued by the National Institute for Health and Clinical Excellence (NICE).

In some areas, multi-disciplinary teams carry out assessments. The teams are made up of several professionals including, for example, a clinical psychologist, a psychiatrist and a speech and language therapist. The professionals assess your child separately and their findings are then brought together by the team leader to inform the diagnosis. This may mean you need to go for several appointments some time apart.

In other areas, you may only see one professional and it’s important that they have experience of diagnosing ASD.

The people who assess your child may use a variety of diagnostic ‘tools’, checklists and observations in order to make their diagnosis. The National Autism Plan for Children (NAPC) recommends that, as well as getting a developmental history, other assessments are carried out at the time of diagnosis. Please see the Appendix at the bottom 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.

During the assessment(s), you should be given plenty of time to ask questions. Don’t be afraid to ask for explanations or clarification if you need them.

The diagnostic report

Sometimes you’ll receive a diagnostic report (which is the formal diagnosis) at the end of your child’s assessment. At other times it is typed up and sent in the post. If this is the case, you might have to wait a while before the report arrives.

Ideally, you’ll get a detailed report containing both the diagnostician’s findings and recommendations for support.

It’s particularly important that your child’s diagnosis is clearly stated. Phrases such as ‘has autistic tendencies’, which are sometimes used, are not very helpful because they imply that a child does not have an ASD. This can cause problems when trying to access ASD-specific support.

Diagnostic reports can be difficult to read and understand in places. They may use language that diagnosticians are familiar with but that you might not be. You can call the diagnostician to talk through any parts of the reports that you aren’t clear about.

You may also find it helpful to read the article that Lorna Wing has written which helps to explain the different diagnoses that people are given. Visit www.autism.org.uk/labels

Some professionals offer a follow-up service. What this includes varies: with some services it can be regular visits to monitor your child’s progress, while with others it is simply telephone advice.

My child has an ASD – what next?

See the section After diagnosis for more information.

What happens if I don’t agree with my child’s diagnosis?

You may be told that your child does not have an ASD, or your child may be given a diagnosis that you don’t agree with.

You can seek a second opinion, which means you either:

  • go back to your GP, explain that you aren’t happy with your diagnosis and ask if your GP will refer you elsewhere. Your GP does not have to refer you for a second opinion but it’s good practice for them to do so, especially if the reason for your child’s difficulties has not been identified
  • pay for a private diagnosis.


If you pay for a private diagnosis, be aware that some local authorities – who provide services to children with an ASD and their families – may not accept the results of private diagnoses. They will insist upon an NHS diagnosis as well.

Another option is that the professional who carried out the first assessment may be willing to refer your child on to a tertiary level service (a specialist level of healthcare) if they feel that your child is a complex case. This may involve an out-of-area referral to a diagnostic service that is not based in the area your primary care trust (PCT) covers. Often, this means there’s a funding issue that delays this process. In some cases, funding for out-of-area referrals is refused.

If you go for a second diagnosis, remember that it may reach the same conclusion as the first diagnosis.

If you wish to complain about any aspect of referral or diagnosis, there is a complaints procedure that you can follow. See Complaints about the NHS: children’s procedure on our website, or call our Autism Helpline on 0808 800 4104 to ask for a printed copy.

Appendix: National Autism Plan for Children

National autism plan for children (p11)
Essential components for a multi-agency assessment

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 child’s 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.

From: National Initiative for Autism (2003). Screening and Assessment: National Autism Plan for Children (NAPC). London: The National Autistic Society.

Quick link to this page: www.autism.org.uk/23620