Autism Assessment - What To Expect
In this brief article, we overview what to expect from the autism assessment process. \
There are no rules governing the way in which diagnostic assessments for autism are undertaken, but there are best practice guidelines.
Assessment by Statutory Services
All areas in the UK offer autism diagnostic assessments for children, but provision varies from one area to another. The process and services involved my vary, but generally diagnosis is undertaking by a team of multi disciplinary professionals which may include:
Speech and Language Therapists
The autism diagnostic team maybe part of a specific autism service, or may be part of the role of professionals working across health, education and social care.
The referral process also varies from area to area, as does the criteria for assessment. In some areas there are restrictions about what professional group or service can refer for assessment and in others referrals can be made by any professional and in some cases parents.
Statutory services are under pressure, and may have lengthy waiting lists. In some areas, where only certain professionals can refer for assessment, parents may find themselves having to wait first to see the referring professional and then for the diagnostic assessment.
Paying privately can be a quicker way of obtaining a diagnostic assessment, however you should explore this option fully before going ahead.
Private assessments can be expensive, and you should make sure that the assessment will provide you with what you require before investing.
Many private centres / practitioners offer a high quality service whereas others may not. Research the reputation of the centre / practitioner first and find out what other’s experiences of the service are.
In some situations a diagnosis is needed in order to access support or specialist provision for a child. Be aware that not all statutory services accept private diagnoses, find out if the service you want to access does before going down the private route. Sometimes the acceptance of a private diagnosis is dependent on the practitioner / clinic who undertook the assessment. In this case make sure you choose somewhere with a good reputation and ask for recommendations.
Pre Assessment - Recognising the Signs of Autism
The behaviours / characteristics associated with autism are often seen in children without autism, when patterns of these behaviours are seen over a period of time, and the child is struggling, a referral for assessment should be made.
Maybe you as a parent have noticed that your child has differences or maybe you were unaware and a professional has raised concerns with you.
The process for making a referral is different in different areas, and may vary dependent on the age of your child. In most cases a referral cannot be made without parental consent. If you feel you do not want your child to be assessed for autism, you have the right to decline the referral.
Some parents find it difficult to obtain a referral for assessment because other professionals do not agree with their observations, or because the child appears to cope in school.
If this is the case, you may find it helpful to review a list of signs / symptoms and discuss with your general practitioner or other professional involved with your child.
You could also contact your local diagnostic team for advice, they will be aware of these difficulties and can offer advice with regard to other options.
Pre assessment Questionnaires
There are many questionnaire that are used to identify thoughts, feelings and behaviours associated with autism or other conditions such as ADHD. Some questionnaires review general wellbeing, physical or emotional health.
Parents may be asked to complete questionnaires as part of the referral process or before being seen at clinic. Questionnaires may also be sent to your child’s school or nursery (only if you have given consent). Questionnaires can provide clinicians with an overview of your child’s strengths and difficulties, can inform the assessment and may help clinicians to direct their assessment.
A child cannot be diagnosed based on information from questionnaires alone
The Diagnostic Assessment
The time it takes to complete a diagnostic assessment depends on the service and the child. Some children need more detailed assessments than others. Sometimes the signs of autism are more obvious than others.
As part of the diagnostic process, you and your child are likely to have more than one appointment, and see more than one professional. Be prepared to repeat yourself!
The characteristics that are explored as part of a diagnostic assessment for autism include :
- Differences in the way a child interacts with others (including how they communicate, engage with others and develop relationships)
- Preferences for sameness (including engaging in routines, repeating actions / behaviours or choosing to engage in the same activities)
- Sensory differences (including being more or less sensitive to stimuli)
A diagnostic assessment will seek information about a child both currently and in the past, and across different environments (such as school, home and clinic).
As part of the assessment, the team will need to:
- Understand your child’s presentation both now and in the past (either through informal or formal interview – explained later)
- Gain an awareness of risk factors from family history and developmental history
- Explore alternative / additional conditions
- Observe your child (either through informal or formal observation – explained later)
- Understand how your child behaves in different settings (they may visit or request information from your child’s school or nursery, or an educational psychologist may assess your child in school)
In addition to this, the team may information through specific assessments such as
- Speech and language assessment
- Sensory assessment
- Assessment of cognitive ability
- Mental health assessment
- Medical assessment
These may be undertaken by members of the team, or you may be referred to other services for this to happen.
Not all children need additional specific assessments, or the need for such an assessment may only become apparent during the assessment or when there is uncertainty.
The team will need to source enough information to be able to make a definitive decision about whether your child is autistic or not
When there is enough clear evidence to demonstrate characteristics have been present since the early years and across different settings, the diagnostic team will diagnose your child as having autism spectrum disorder.
If your child does not meet the diagnostic criteria for autism, your child will be given advice about next steps from the team.
Formal / Structured Interview and Observation Tools
There is no specific test for autism. There are assessment tools that help clinicians gather the information they need in a more structured way. Some people refer to these tools as ‘tests’, they are actually information gathering tools.
If an assessment tool or ‘schedule’ is used, the information gained will be used to inform the overall assessment. Diagnosis will be made by a clinical decision.
Links to further information about commonly used assessment tools are below. The ADI-R, CARS and DISCO are interview tools and ADOS is a practical observation tool.
Receiving a Diagnosis
After the assessment is complete, the diagnostic team should offer you an appointment to informs you of the outcome and what this means.
During the assessment, the team will have gathered a lot of information about your child. They will have used this to create a personal profile of your child, which will include an overview of your child’s strengths and difficulties and the best ways to support them.
This profile will be very useful for you and the other people who are involved in your child’s care.
Your child’s profile will need updating in time, find out how we can help
Different children will need different types of support. Your diagnostic team may provide you with early post diagnostic support or refer you to another service for this. Early post diagnostic support may involve training for yourself and / or practical interventions for you or your child.
Ongoing support may be provided by a range of services. Your child may need additional support in education, specific therapy or support from voluntary sector organisations.
Your diagnostic team will advise you of your options.
Many parents find local support groups useful, your team will let you know what is available in your area.