Facing a long wait for your child’s autism assessment? How to support them in the meantime

NHS trusts are unable to meet the current demand for services dedicated to children and young people who are waiting for autism assessments, health leaders have warned.

In a new report from NHS Providers, which included 134 responses from 95 trusts, 86% said that the time it takes to access an initial assessment has increased, with one trust admitting that it has risen from 14 months pre-pandemic to now 38 months.

Unfortunately, this can bring up a lot of concerns for parents.

“It can be an anxious time for the child if they are not getting the right support, and have a negative impact at school or home. There can also be little support for the children or parents,” said parent mentor Jane Miller, who helps parents understand and hear their children, especially those with autism and ADHD. Miller also carries out autism and ADHD assessments for children and adults at the Autism ADHD Test.

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“I speak to parents with children who are self-harming or threatening to commit suicide due to not being able to cope with everyday life. The worries for these parents can be that their child is getting worse, not getting the support they need, and are missing out socially and with education.”

So how can parents support their children during this difficult time? Health experts share everything you need to know.

Be confident, consistent and caring

Once the idea of a possible autism diagnosis has been discussed and the paperwork sent, it can be a long wait for the assessment process.

“The assessment process begins with a lot of form filling, this is to get a picture of the child from several different perspectives, including school and home,” said Charlotte Cook, a trainee clinical psychologist working in child and adolescent mental health services, and also the founder of The Thinking Pod.

“Looking after your wellbeing while waiting for the assessment can take its toll, especially when you can feel like you are struggling to manage behaviour that you don’t understand.”

But for Cook, parents are also the experts on their child and should be consistent and caring.

“You will know your child best. You are the expert on your child. You know how to calm them and you know what they don’t like. All of that does not go out of the window because someone is identifying formally that they may need extra help and support,” she said.

“Having some of your child’s favourite things, snacks and drinks will also help you and your child on the day of your assessment too, as you are all likely to feel overwhelmed.

“If you can, having a supportive person there with you will help you to regulate your emotions, which then helps your child regulate theirs.”

Take time out

Parents often put their children before themselves, even sometimes at the expense of their own health.

“Take some time out for yourself,” said Cook.

“I know this can be hard, especially when you have a child with additional needs and you’re not sure someone else will be able to manage it. However, taking care of yourself and your mental health is just as important.”

Join support groups

Parents need to remember that receiving a formal diagnosis will not mean that their child will suddenly change overnight.

“You will still be managing the same issues, albeit you may have a wider understanding and acceptance of why things are happening as they are,” said Cook.

“There are amazing parental support groups out there, both online and in person that will have an understanding of what you are going through. Having someone to talk things through with, who also knows the process can be invaluable. Feeling alone is one of the biggest factors that will add to your stress levels.”

It’s worthwhile searching online for support groups in your area, or if there are any virtual groups you could join.

Be organised and proactive

While waiting for your child’s assessment, it’s always a great idea to write down your thoughts, questions and concerns, to ensure that you leave the session well-informed about how best to support your child.

“Have an understanding of what the assessment process is in your area, this will enable you to then talk to your child about what to expect on the day,” said Cook.

“Gather your observations together so that the information is all in one place. If you have all the reports in one place, it will help you feel more organised, confident and in control. Also, consider writing yourself a list of your child’s strengths and weaknesses – this can be taken to the assessment.”

Reach out to other organisations

Sometimes parents can feel stuck while they are waiting on their child’s autism assessment.

“You don’t need to wait for the diagnosis to reach out for additional support from organisations such as schools or speech and language therapists,” said Cook.

“GPs can support with referrals as are many of the voluntary organisations that support parents. Financial support such as Disability Living Allowance can also be claimed without a formal diagnosis.”