Autism diagnosis
October 3, 2023
Getting a diagnosis, and a better understanding of your child’s needs and the support that could benefit them could be very helpful.
Characteristics of autism
Characteristics of autism vary between each person, but for a diagnosis to be made a child will usually be assessed based on:
Social communication
Restricted or repetitive behaviours/interests
Another way of understanding autism is as a natural part of ‘neurodiversity’. We all have differences in how we think and interact and differences in what we enjoy doing. When these differences lead to an individual feeling less comfortable in certain situations or when these differences lead to challenges in learning or daily living it is helpful to use a terminology (autism, autistic or autism spectrum) that enables that individual to access support where required.
There are a range of early signs that parents might report. These may include a child using less eye contact or a delay or difference in speech and language development and communication. Young children on the autism spectrum may also have reduced non-verbal communication, and may not point or gesture. Some parents notice that their child’s play may be different to that of their peers, they may have difficulty in joining with other children and may prefer to play alone or with adults. Play might be less creative and more repetitive. The child may seem not to be sharing their interest with others. Sensory difficulties are also common - both over-sensitivity and under-sensitivity to noise, light, touch or taste.
These characteristics will typically have been present since early childhood and will affect everyday life. Some children can be diagnosed as early as 2 years old, but it’s common to be diagnosed later, or even as an adult. To learn more about the diagnostic criteria itself, the National Autistic Society have an informative pagehere.
Getting a referral
This generally starts with making an appointment with your GP, or health visitor if applicable. It’s recommended to take along a list of behaviours and characteristics that make you think your child might be autistic. You may even be keeping a behaviour diary. Hibi’s care management tools can help with this. If your child is at school, you may want to talk to your school’s Special Educational Needs Coordinator (SENCO) to discuss your thoughts. It can be helpful if you ask school or nursery staff to provide a letter to support a referral outlining any concerns they may have noticed in the educational setting.
Your GP may choose to do a ‘screening interview’ using a tool like the M-CHAT (Modified Checklist for Autism in Toddler). This will give an indication but not a diagnosis. Note that screening tests are separate to a proper assessment and diagnosis, and therefore may not entitle your child to support.
Your GP will then decide whether to refer your child for a formal assessment (diagnosis). This will usually be run by the local Community Paediatrician or Child and Adolescent Mental Health team. There can be long waits for this, and you may be referred to other healthcare professionals in the meantime, such as speech and language therapists or occupational therapists.
Whilst waiting, there are a few things you can do to seek support before an assessment:
Arrange a meeting with the SENCO to discuss support in school - you can ask for a support plan
Ask your GP or health visitor if there are support organisations that they can refer you to, or communities that you can join yourself (such as Parent Carer Forums)
Search local directories, such as those from theNational Autistic Society, for local support
Consider aneeds assessmentfrom your Local Authority
The diagnostic assessment
The assessment of autism tends to be conducted at child development centres or by child and adolescent mental health services by professionals such as paediatricians, psychologists, speech and language therapists or psychiatrists. A diagnosis will involve a multidisciplinary team of professionals, who will assess your child separately and their shared findings will be used to inform the diagnosis. As a result, you might find yourself going to several appointments over the course of a diagnosis.
Typically, the assessment will include:
Reports from different settings (school, nursery, etc.)
Autism specific developmental and family history
Observations in more than one setting
Communication, behaviour and mental health assessments
A physical examination
You might receive the diagnostic report (informing you of a diagnosis or not) on the day of the assessment, or at a later date. This may be a conversation or a written report - you can call the diagnostician to talk through any parts of the report. The reports are deficit-based and details what your child cannot do, which can be upsetting. The report should give a clear diagnosis and may give recommendations of support.
You may disagree with the diagnosis, in which case you can seek a second opinion. This can mean going back to the GP to explain your reasoning and asking for a referral somewhere else, or paying for a private assessment.
Going private
Private diagnostics are also option, particularly given increasingly long waits to assessment. Costs can vary, so it’s do reach out to several providers to understand 1.) price, 2.) what this pays for, and 3.) whether any follow up services or support are included. You should also bear in mind that some local authorities in the UK may not accept the results of a private diagnosis, and might insist on an NHS diagnosis. For this reason, it is often recommended to stay on the waiting list for an NHS assessment even if you decide to go privately.
Questions to ask
The importance of diagnosis is the ability to use that to make sure your child receives the right support. Do make sure to ask about how the diagnosis can lead to the right therapies and interventions, and what they might look like. Make sure you have identified who your point of contact is. It will usually be your GP, but may be the paediatrician, SENCO or another health professional. Be sure that your point of contact has fully explained who you are being referred to and why. Don’t be afraid to ask for explanations.
Make a note of every referral, as this helps if you need to give a history to health professionals or need to refer back. Key things to keep track of include the professionals name and organisation, why they are referring you, who they are referring you to, and the expected timeline. It can be helpful to prepare in advance of appointments the questions and topics that you want to cover.
Next Steps
Autism is not a medical condition with treatments or a cure, but children may benefit from different strategies and approaches to help them learn, flourish and meet their full potential. You can learn more about them by exploring Hibi’s content onafter a diagnosis.