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NHS trusts are unable to meet current demand for services dedicated to children and young people awaiting autism assessments, health leaders have warned.
In a new report from NHS Providers, which included 134 responses from 95 trusts, 86% said the time it takes to access an initial assessment has increased, with one trust admitting it has risen from 14 months before the pandemic to 38 months now.
Unfortunately, this can cause a lot of worry for parents.
“It can be an anxious time for the child if they don’t get the right support and this can have a negative impact at school or at home. There can also be little support for the child or the parent,” said parent mentor Jane Miller, who helps parents understand and listen to their children, especially those with autism and ADHD. Miller also conducts autism and ADHD assessments for children and adults on the Autism ADHD Test.
“I speak to parents whose children are self-harming or threatening suicide because they can’t cope with everyday life. These parents worry that their child is getting worse, not getting the support they need, and falling behind socially and educationally.”
How can parents support their children during this difficult time? Health experts share everything you need to know.
Be safe, consistent and supportive
Once the idea of a possible autism diagnosis has been discussed and paperwork has been submitted, there may be a long wait for the evaluation process.
“The assessment process starts with filling out lots of forms, in order to get a picture of the child from different perspectives, including school and home,” said Charlotte Cook, a clinical psychologist in training who works in child and adolescent mental health services, and also founder of The Thinking Pod.
“Taking care of your well-being while you wait for an assessment can take its toll, especially when you feel like you’re struggling to control behavior you don’t understand.”
But for Cook, parents are also the experts on their children and must be consistent and loving.
“You know your child best. You are the expert on his or her case. You know how to calm him or her down and you know what he or she doesn’t like. All of that doesn’t go away just because someone formally identifies that he or she may need additional help and support,” she said.
“Having some of your child’s favorite things, snacks, and drinks will also help you and your child on screening day, as everyone will likely feel overwhelmed.
“If possible, having a supportive person will help you regulate your emotions, which in turn will help your child regulate theirs.”
take some time off
Parents often put their children before themselves, sometimes even at the expense of their own health.
“Take some time for yourself,” Cook said.
“I know this can be difficult, especially when you have a child with additional needs and you’re not sure if anyone else can take care of them. However, looking after yourself and your mental health is just as important.”
Join support groups
Parents should remember that receiving a formal diagnosis will not mean their child will suddenly change overnight.
“You’ll still be dealing with the same issues, although you may have a broader understanding and acceptance of why things happen the way they do,” Cook said.
“There are amazing parenting support groups, both online and in person, that will understand what you’re 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 increase your stress levels.”
It is worth looking online for support groups in your area or if there are any virtual groups you can join.
Be organized and proactive
While you wait for your child's evaluation, it's always a good idea to write down your thoughts, questions, and concerns, to ensure you leave the session well-informed about how to best support your child.
“Understand what the screening process is like in your area, which will allow you to then talk to your child about what to expect on the day,” Cook said.
“Gather your observations so that all the information is in one place. If you have all the reports in one place, you will feel more organized, confident, and in control. Also, consider writing down a list of your child’s strengths and weaknesses; this can be brought to the evaluation.”
Contact other organizations
Sometimes parents can feel stuck while waiting for their child's autism evaluation.
“There is no need to wait for diagnosis to seek additional support from organizations such as schools or speech and language therapists,” Cook said.
“GPs can provide support with referrals, as can many of the voluntary organisations that support parents. You can also apply for financial help, such as Disability Benefit for Daily Living, without a formal diagnosis.”
