Your Child’s Diagnostic Assessment

On the day

You will meet a team composed of different professionals who will each assess your child. Their separate findings will be combined and passed on to the team leader to inform the diagnosis. You may need to attend several different appointments, which may be spaced out across weeks or months.

Professionals diagnosing autism should use the following guidelines:

• NICE Clinical Guideline 128 in England, Wales and Northern Ireland
• SIGN Clinical Guideline 145 in Scotland.

An autism assessment usually includes:

• reports from all educational institutions (e.g., school, nursery)
• an autism-specific developmental and family history
• observations at home, school, college, nursery or elsewhere
• communication, behaviour and mental health assessments
• a physical examination
• tests and assessments for other conditions if required

The team should explain why they are doing each test. You have lots of time to ask questions. Ask for explanations if necessary.

The diagnostic report

The diagnostician will tell you if they think your child is autistic or not. This might happen on the same day as the assessment, or they may phone you on another day, or post a written report to you.

This type of report can be difficult to understand. You can get in contact with the diagnostician to discuss anything that you do not understand. These reports can also be very deficit-based, focusing on what a child cannot do or is not doing, which can be upsetting to read as a parent or carer.

The report should give a clear diagnosis. Phrases such as ‘has autistic tendencies’ are unhelpful as they suggest a child is not autistic. This can cause problems when trying to access autism-specific support.

It is extremely important that you fully understand your child’s individual profile of needs. The report may say that your child presents with a particular autistic profile, such as Asperger syndrome or demand avoidant profile, and may suggest ideas for support.

Being referred to a specialist service

If the professionals think that your child presents a complex case, the professional or team who did the assessment may refer your child to a tertiary level service (a specialist level of health care), such as the charity Lorna Wing Centre for Autism. Funding issues may delay getting a second opinion. There may not be a tertiary service in your local area. Sometimes, funding for out-of-area referrals may be refused.

Complaints

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 England, Scotland, Wales and Northern Ireland.

If you have a complaint about a private diagnostician, they should have their own complaints procedure, as required by the Care Standards Act 2000.