If your child is on the autism spectrum, getting a diagnosis, and a better understanding of their needs, can be a positive thing. Screening tests are available but should not be seen as an alternative to proper assessment and diagnosis.
Here, you can find information about autism, referrals, what you can expect to happen during the assessment, and how to complain if you aren't happy about any aspect of the process. You can also find out about support you can get after your child’s diagnosis.
We know that this can be a really worrying time but it's important to know that you're not alone, and that we're here to help. Our Autism Helpline offers confidential information, advice and support. We can also point you towards local sources of help and support.
Is it autism?
The characteristics of autism vary from one person to another, but in order for a diagnosis to be made, a person will usually be assessed as having had persistent difficulties with social communication and social interaction and restricted and repetitive patterns of behaviours, activities or interests since early childhood, to the extent that these "limit and impair everyday functioning".
Children can be diagnosed as autistic when they’re quite young, in some cases from the age of two. But not everyone is diagnosed early in life. It’s quite common for a child to not get their diagnosis until they are older, or even an adult, particularly if they don’t have accompanying learning disabilities.
Some of the main signs that a child may be on the autism spectrum include:
- not drawing their parents’ or others’ attention to objects or events, for example pointing at a toy or a book, or at something that is happening nearby (or a child may eventually do this, but later than expected)
- carrying out activities in a repetitive way, for example always playing the same game in the same way, or repeatedly lining toys up in a particular order
- resistance to change or doing things differently
- emerging difficulties with social interaction and social communication
- behaviour such as biting, pinching, kicking, pica (putting inedible items in the mouth), or self-injurious behaviour.
Read more about diagnostic criteria.
Getting a referral
Many children on the autism spectrum, and their families, benefit from having a diagnosis and an understanding of their profile of needs. Having an explanation for the difficulties that your child has been experiencing can bring a sense of relief. It also provides you with the information you need to get access to the most appropriate education and services.
Some people prefer not to get a formal diagnosis for their child. Sometimes a parent feels that their child will make greater progress if they do not think of themselves as having a disability. For these parents, knowing the possible cause of their child’s strengths and difficulties seems to be enough.
Speak to your GP or health visitor
Make an appointment with your GP (or health visitor in the case of young children). Take along a list of behaviours and characteristics that make you think your child might be autistic. It could be useful to keep a behaviour diary leading up to any appointments after the referral.
If your child is pre-school age, your health visitor or GP may carry out a ‘screening interview’ called M-CHAT (Modified Checklist for Autism in Toddlers). This will not give you a diagnosis, but it is a way of indicating whether your child may be autistic.
Other tools, sometimes available online or as smartphone apps, also claim to be able to screen for autism. The use of screening or testing tools is potentially problematic as there are many factors affecting a child’s development and many other sensory, physical and mental health conditions that will require specialist investigation. The use of such a tool should not be seen as an alternative to proper assessment and diagnosis.
If you have a school-age child, it can be useful to make an appointment with the school’s Special Educational Needs Coordinator (SENCO) or Learning Support Teacher to discuss your concerns. Teaching staff may have also identified similar behaviours and characteristics and be able to offer support in pursuing a diagnosis for your child.
Once your GP or health visitor is convinced of your child’s difficulties, your child should be referred for a formal assessment (diagnosis). You may have to wait some time before you actually go for the assessment. In the meantime, your child could be referred to other teams such as a speech and language therapy, occupational therapy, or education support services. These professionals might help you to better understand your child's needs.
Your child should have a multi-disciplinary diagnostic assessment – that is, an assessment by a team of professionals. The team might include, for example, a paediatrician, a speech and language therapist and a specialist psychologist.
If your child is referred to an individual professional, it’s important that they are experienced in diagnosing autism.
Private diagnosis is an option, if you can pay for one, and can reduce the waiting time. The costs of private assessments can vary, so it’s a good idea to phone several services to ask about costs, what this pays for and whether any follow-up service is offered.
Some local authorities may not accept the results of private diagnoses. They might insist upon an NHS diagnosis before they will provide services to you and your child. For this reason, we suggest that you stay on the waiting list for an NHS assessment even if you also decide to go privately.
Find diagnostic services in our Autism Services Directory, or contact our Autism Helpline.
The diagnostic assessment
Here's what you can expect to happen on the day of the assessment and soon after.
On the day
In a multi-disciplinary team, the professionals are likely to 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 and it may be some time between appointments.
Different diagnosticians use different methods to diagnose autism, but there are guidelines that they should follow:
The National Autism Plan for Children (NAPC) says how a multi-disciplinary assessment should be carried out. It should include:
- reports from all settings (eg school, nursery)
- an autism-specific developmental and family history
- observations in more than one setting
- cognitive, communication, behaviour and mental health assessments
- an assessment of the needs and strengths of all family members
- a full physical examination
- tests and assessments for other conditions where appropriate.
The team should explain to you the reason for each test or assessment. 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
The diagnostician will tell you whether or not they think your child is autistic. They might do this on the day of the assessment, by phone on a later date, or in a written report that they send to you in the post.
Diagnostic reports can be difficult to read and understand in places. You can call the diagnostician to talk through any parts of the report that you find unclear.
The report should give a clear diagnosis. Phrases such as ‘has autistic tendencies’ are not very helpful because they imply that a child is not autistic. This can cause problems when trying to access autism-specific support.
It is very important to understand the child's individual profile of needs. The report may say that your child presents a particular autism profile, such as an Asperger syndrome or demand avoidant profile, and may give recommendations for support.
Find out more about autism profiles, diagnostic criteria, tools, and manuals.
An autism diagnosis can be difficult to come to terms with. You may be coping with a condition you know very little about, and trying to find new ways for everyone to live together and feel supported. Some professionals offer a follow-up service, but what this includes varies. It can mean regular visits to monitor your child’s progress or telephone advice.
Find out more about support you can get after your child’s diagnosis, and guidance on telling your child about their diagnosis.
If you don’t agree with the diagnosis
You may be told that your child is not on the autism spectrum, or your child may be given a diagnosis that you don’t agree with.
You can seek a second opinion, which either means going back to the GP to explain that you aren't happy with your diagnosis and ask them to refer your child elsewhere, or paying for a private assessment.
If you go for a second assessment, remember that it may reach the same conclusion as your first.
Being referred to a tertiary service
If they feel that your child presents a complex case, the professional or team who did the assessment may refer your child on to a tertiary level service (a specialist level of health care), such as the NAS Lorna Wing Centre for Autism. Funding issues can often delay the process of getting a second opinion. There may be no tertiary service in your local area. In some cases, funding for out-of-area referrals is refused.
You have the right to complain if you're not happy about any aspect of referral, diagnosis or care that your child has received from an NHS service. The complaints procedure is different in each UK nation.
If you have a complaint about a private diagnostician they should have their own complaints procedure, as required by the Care Standards Act 2000.
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Last reviewed 8 September 2016