1. Talk to Someone

For some, the prospect of either themselves or a loved one being diagnosed with Autism may seem worrying, however, there is plenty of support out there, and the first step is always to talk to someone if you have any concerns. 

This should be either a health professional, such as your local GP, or SENCO (Special Educational Needs Coordinator) at your child’s school. Here, you will be able to discuss your concerns and request referring you or your child for an autism assessment.

At what age should I seek an assessment if my child is displaying traits of Autism?

Autism can sometimes be diagnosed at 18 months of age or earlier, however, it is considered that by age 2, a diagnosis by an experienced professional can be deemed reliable. 

However, it is worth highlighting that girls are more likely to receive a confirmed diagnosis of autism in their teens as opposed to earlier in childhood. This is because girls tend to mask their traits by conforming to social norms and copying their friends, which can lead to prolonged emotional distress if left unchecked.

Therefore, parents and caregivers should be vigilant and seek help if they have concerns about their child’s development, regardless of their age.

What if I have reservations about getting a diagnosis?

While seeking a diagnosis is a personal decision, it can bring a sense of understanding and relief for the individual and their needs. Even if you are unsure about getting a diagnosis, it may be beneficial to request a referral as waiting times for assessments can be lengthy, up to 2 years. It may be better to initiate the process sooner rather than later.

2. Diagnosis

 

Diagnosing autism is challenging as there is no definitive physical test, such as a blood test, that can confirm the condition with complete accuracy. Therefore, an autism assessment is conducted to determine if an individual has autism.

What is an Autism Assessment?

The autism assessment, conducted by trained professionals, includes a series of questions, tests, and an examination of the individual’s medical history. The assessment results in a report that determines if the individual has autism.

What does the Autism Assessment consist of?

This can vary depending on the case, but in general you can expect an assessment to include: 

• Reports from various settings (such as school or nursery) 
• Analysis of autism-specific developmental and family history 
• Observations in various settings 
• Communication, behaviour and mental health assessments 
• Tests and assessments for other conditions where appropriate

Some common tools you may come across during the assessment which will be used to carry out the above functions include: 

• DISCO (Diagnostic Interview for Social and Communication Disorders): series of questions, as well as gathering information from the individual to assess social and communication abilities.
• ADI-R (Autism Diagnostic Interview – Revised) – interview which is divided into five sections: opening questions, communication questions, social development and play questions, repetitive and restricted behaviour questions, and questions about general behaviour problems.
• ADOS (Autism Diagnostic Observation Schedule) – observing how your child responds and interacts with clinicians during the activities
• 3Di (Developmental, Dimensional and Diagnostic Interview) – a computer based program which emulates Autism Diagnostic Interview (ADI-R) algorithms, but unlike the ADI-R, it is focused largely on current rather than historical behaviour of note.

The assessment typically takes place over multiple appointments. Some of the assessment activities may appear daunting, but the team will provide explanations for each one and ensure that you have ample time to provide answers and ask any questions for yourself or the subject.

Who will be involved in a Diagnosis?

The team is usually made up of people from different professions. They are likely to assess the participant separately, and the individual findings will be used by the team leader to make an informed decision. 

Some of the professionals that could be involved include: 

• GP: make referrals to relevant professionals 
• Psychiatrists: diagnose autism and may offer a follow-up service. Often involved where there are behavioural issues or mental health difficulties. 
• Behavioural support and clinical team: conduct assessment of the participant’s behaviour and come up with a behavioural management plan.
• Counsellors and psychotherapists: talk through issues with individuals and families that arise after a diagnosis 
• Educational psychologist: carrying out psychological assessments including learning profile and needs
• Dietician: provide advice and information on nutrition and diet
• Health visitors: especially trained nurses responsible for health and development in preschool children 
• Occupational therapists: concerned with the difficulties children have in carrying out everyday activities
• Outreach worker: help adults to access opportunities and activities outside their home 
• Paediatricians: experts in the health and development of children, particularly those with developmental disabilities.
• SENCO: the teacher in a school or nursery with day-to-day responsibility for SEN (Special Educational Needs).
• Psychologists

When will I know the results of the assessment?

The diagnostician may inform you of the assessment results immediately or at a later date, either in person, over the phone or in writing. In some cases, if the subject’s case is complex, the assessment team may refer them to a higher level service, which may result in a delay in diagnosis.

What kind of thing might the report say?

When you receive the report, it will likely say:

• Whether the individual is autistic, along the lines of you ‘meet the criteria for autism spectrum diagnosis’
• What the subject might need help with 
• What the individual needs help with

The report may be complex, but you can contact the diagnostician to discuss any unclear parts. Additionally, you or your child may be offered a follow-up appointment with the assessment team to review the report. 

It’s essential to retain the report as it will be used throughout the individual’s life as autism is a lifelong condition.

3. Post-Diagnosis 

Receiving a diagnosis can be challenging, as it may include information about limitations and abilities that can be difficult to hear for the individual or their loved ones. However, it’s important to remember that there is a wide range of support available to help the individual and their loved ones navigate any changes that may occur after a diagnosis of autism.

What kind of support is available after a diagnosis?

Whether the report confirms or denies the presence of autism, the assessment team should provide additional information to help you understand and cope with the results.

If the report shows that the subject is autistic, the team will:

• Give you information about what the implications might mean for you both now and in the future 
• Discuss plans for providing you with support 
• Tell you when they will meet with you next 

If the report shows that the subject is not autistic, they will explain how they reached this decision and talk to you about any other services that might help.

What if I don’t agree with the result?

If you are not happy with the diagnosis, you can:

• Go back to your GP and request to be referred elsewhere for a second opinion
• Pay for a private assessment

Note that if you do request a second opinion by either method, this does not guarantee they will reach a different conclusion.

Follow the links below for information on what to do following a diagnosis of autism:

Guide for adults: https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/post-diagnosis-support/autistic-adults

Guide for parents or carers: https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/post-diagnosis-support/parents-and-carers

Useful links

NHS Website: https://www.nhs.uk/conditions/autism/getting-diagnosed/how-to-get-diagnosed/

Autism UK: https://www.autism.org.uk/advice-and-guidance/topics/diagnosis