Autism: to assess or not to assess? That is the question

For many families, deciding whether to pursue an autism assessment for their child is a difficult decision. It’s a process that many of the team here at Spicy Minds have wrestled with and it’s different for each family and their unique circumstances. Here we explain some of the benefits we have experienced through opting to assess autism.

It can be such a confusing time for parents and carers who are exploring the possibility that their child may have a special educational need or be neurodivergent. The day-to-day management of daily life is hard enough. At the same time, you’re trying to work out what is going on for your child – are there grounds for an autism diagnosis or are they struggling for any number of other reasons? Getting to grips with the situation can be a long process. Parents and carers essentially become detectives as they try to get a handle on what is going on.

What if you suspect your child may be autistic? There may be a host of emotions that go along with that – fear, overwhelm, worry. Will my child be labelled? Will they be prejudiced against? How will they cope with their diagnosis? Will it actually help them? These are all valid concerns and of course they don’t have watertight answers. However, in our experience, identifying autism was a critical step in understanding our children’s behaviours, being a more compassionate parent and accessing support.

A strange version of relief

There’s no doubt, being told your child is autistic is an emotional moment. This isn’t the case for all families but, for some, there is a strange sense of relief that goes alongside it. To know that this hasn’t been a fabrication, that you’ve been parenting an autistic child all this time, that there’s a reason why this has all felt so hard – it’s a powerful validation of what you have been experiencing. This alone opens the door to a different, hopefully kinder, narrative towards the perception you have of yourself as a parent.

Responding with compassion

It can feel a bit like you’ve been parenting all this time in the dark. When autism is confirmed, there can be a sense that a light has been turned on and now you can see your child, and the context of their difficulties, for who they really are. This can bring a new sense of compassion and understanding.

It’s easier to make adjustments for your child and support them through difficult emotions when you understand that their experience of the world is different to yours and that their behaviour is coming from a place of overwhelm or distress. Hopefully, this extends to how the wider family and school responds once everyone has gained an understanding of the full picture.

More support

So this is an interesting one and it would be disingenuous to imply that an autism diagnosis brings with it a wealth of support. Sadly, it doesn’t always. For many parents, they are handed a bunch of information at the point of diagnosis and that’s about it. However, understanding your child’s needs is an important part of getting better support in place at school, whether you choose to apply for an EHCP or not.

Once you understand what might be going on for your child, you can advocate for reasonable adjustments, particularly if your child’s needs affect their ability to access education. Under the Equality Act 2010, schools and other academic institutions have a legal duty to make reasonable adjustments for disabled students, which includes those with autism.

A diagnosis may help your child access Disability Living Allowance but it’s worth remembering that this is dependent on the required level of care rather than whether there is a diagnosis. 

If you know your child is autistic, you can start to advocate for your child in all sorts of situations, whether that be extra-curricular activities, family and social gatherings and even finding the most suitable health professionals who can support your child. Finding people who have specific experience of working with neurodiversity can be extremely helpful. 

Why do I find this so hard?

A diagnosis can help your child answer this difficult question. When all those around them seem to be coping with things that they find intolerable, it’s confusing and upsetting. A diagnosis allows your child to see more clearly why they are experiencing the world differently from their peers. They gain a clearer understanding of themselves and, in time, will be able to advocate better for what they need. How you communicate the diagnosis to your child is of course another subject entirely and one we will explore.

To sum up

Every situation is unique and what is right for one family may not be right for another. Whatever a family decides to do, they need to be supported in their decision by those around them. And of course, things change over time – perhaps an assessment doesn’t feel like the right path at the moment and that may change as time goes on. We can only make decisions based on what is currently happening. For those that choose to pursue an assessment, take confidence in the fact that, for many families, it is a positive step that unlocks greater awareness, clarity and kindness.

Reveal offers a rigorous assessment of autism, not a medical diagnosis.