For many in the UK the average wait to get an autism diagnosis for a child can be between 1-3 years!! There are different factors that impact how quickly a child may be seen and it can also be a real postcode lottery. Even if you decide to get a private diagnosis you are likely to still have a wait. It is not a quick process so if you have concerns or are unsure about pursuing a diagnosis I would recommend getting a referral done as soon as you can because there is a wait ahead.
When your child has had a referral for assessment it can be a really stressful and confusing time. You will likely have questions if a diagnosis is right for your child. My advice on this would be to let the experts do that assessment and lets focus on what we can do now. It can be hard to know what to say without a diagnosis but I would always assume your child has needs that we can focus on now. Don’t let being on the waiting list hold you up from getting support now.
The majority of supports a child might need can be put in place without any diagnosis. Also these supports will be good regardless if your child gets a diagnosis or not so there is no need to wait. Here are my top ten things to do while you are on the waiting list.
Top ten things to do while you are on the waiting list:
1: Learn about autism
Autism is really common so you likely already know many neurodiverse people, even if you don’t realise it. Learning about autism is something everyone should do. My post on everything you need to know about autism and neurodiversity is a good place to start.
2: Talk to your child about difference
How you approach this one does depend on the age and stage your child is at. However it’s a good idea to teach them about about neurodiversity and people who think differently. Some children will already recognise that they are different. Understanding their differences may help your child make sense of themselves and their feelings. It can also enable them to better advocate for themselves.
3: Connect with other parents
There are lots of great parent support groups and charities where you will find many other parents also on the waiting list. It is so important to have people you can talk to that understand. You will also find parents who are a bit ahead of you who that have tons of knowledge and are ready to help you out.
4: Look into Disability Living Allowance
No diagnosis is required to claim Disability Living Allowance (DLA) and it is not means tested. So many people wait but DLA is based on needs not diagnosis so the earlier you claim the better. There are several levels of award which is based on the support needs for each individual. I expect most children on the waiting list for an autism assessment have needs over and above their peers so do look at this. More information can be found here.
5: Speak to your SENCO
Every school or early years setting should have a Special Educational Needs Co-ordinator (SENCO). It is their job to ensure children get the support they need in education. Again this is based on needs not any diagnosis so there is no need to wait to put supports your child needs now in place. Here is a list of reasonable adjustments that may be useful in school.
6: Be kind to yourself
It can be a really hard time when your child is under assessment for autism. Everyone is focused on what your child can’t do or struggles with. This takes an enormous emotional toil on you. Just doing these 10 things will take up time and energy you are already struggling to find. Try and be kind to yourself and take a break when you can.
7: Get referrals
If your child needs help now is the time to ask for it. If you are struggling with communication ask for a referral to speech and language. Struggling with motor skills or sensory needs you can see an occupational therapist. If your child has mental health issues you may need to get a referral to Child and Adolescent Mental Health Service (CAMHS). Struggling with food ask to see a dietician, toileting see the continence nurse and so on. You may get told ‘let’s wait for the autism diagnosis’ but that won’t change the areas your child is struggling with so the sooner you speak to all the relevant people the better.
8: Start using visuals
Visual aids are something we all use from maps to calendars it just depends on your age and stage what type you need to use. Visuals really support a persons understanding but they can also be huge for reducing anxiety. There are so many ways to use visuals and this is an easy thing to introduce now. Find out more about visual aids here.
9: Start being sensory aware
Many autistic children will have sensory needs so it is worth learning more about sensory processing now. Introducing or encouraging more sensory based activities and supports will be good for all children. This can also be something that can have a really big impact on providing support for a child so take time to understand sensory differences.
10 Get it in writing
You are likely tired and busy so try to get everything in writing, be organized with reports / letters and file everything. You will find you are often having to refer back to reports / letters and it will feel like you are your child’s PA but the more you have on file the better prepared you are when it is needed.
I have been through the assessment process with both my children and work with parents all the time in this situation. The ten tips above are without a doubt the things that will really help you now. There is no need to wait because they can make a difference now.
Are you on the waiting list, have you got a diagnosis – what would you recommend?