Understanding a diagnosis is more than just the label.

After the autism diagnosis, a pathway to understanding the autistic self

What does a diagnosis of autism mean to you and your child?  Often getting that question answered is the beginning of getting access and support.  Whether that support is from therapists or funding bodies, or within an education setting.  It certainly helps to have this difference formally recognised and a formal diagnosis certainly helps with this. 

But getting that label, whilst important is really the beginning.

And although I often say that the label does not change the child, but process of understanding what this label means can help develop self identity, so in that way the label can change them (in a positive way).

It is my opinion that when we have an understanding of what autism means- beginning as young children ideally, will grow to be more complex and rick as these children grow into older children, teenagers and adults.  But I do think that even young children can have understanding that is more complex than just knowing their label.

I feel it is wonderful for children to have a positive understanding of being autistic from the very beginning.  But whilst knowing that they are autistic in terms of being able to tell others, I feel that unpacking out what this actually means will also an important part of support and their journey.

So if you can assist your child to learn more than just that they are autistic, can be an important part of parenting process.  So keeping in mind that being autistic impacts on so many areas of experiencing and functioning and is an important part of a child’s identity. 

So the more they can understand;

  • Their strengths and skills,
  • What they find easy and what they find difficult,
  • How they process information,
  • How they see their needs for movement,
  • How they understand their own feelings,
  • How others can support their learning style,
  • How much time they need for different activities
  • How much relaxation time they need,
  • What kinds of people they feel most comfortable around,
  • How to manage their energy needs,
  • How they communicate best,
  • How they receive information best,

the better able they will be able to advocate for themselves, explain their needs to others and have a well rounded and realistic understanding of who they are and what they are capable of (anything and everything!). 

Sometimes hear children, who are well aware that they are autistic from a young age, don’t progress their understanding much past this this term.  I hear them become frustrated with their challenges and label their autistic brain as being the problem.  They wonder why they have this brain-that they are told is great, but confusingly, they are also aware that their brain is related to things like intense emotions, meltdowns and sensory overwhelm.

Hearing stories like this tells me that we need to make sure they have a deeper understanding of what it means to be autistic, more than just the word and more than just the diagnostic criteria.

We can explore what they like and find challenging about being autistic (in a world generally designed by and for non-autistics) and that this might be part of what we need to change.  Explore the idea that there are lots of other autistics who also have some of these frustrations (so they feel less alone) and encourage them to look at ways they can celebrate their brains and acknowledge that stress causes everyone’s brains to be reactive.

So if you are a parent of an autistic, child or teen, check in with the kinds of things your child might be saying about themselves.  Have there been many discussions about being autistic, their experiences and beliefs about their autism, since they’ve been ‘told’ about their diagnosis? 

If it’s been a while, or you have heard negative things being spoken about themselves and being autistic, find a moment to touch base with what they are finding challenging and empathise with the difficulties they are experiencing. 

Normalise that they are most often living with an invisible brain difference that others may find hard to understand.  That they often are expected to work extra hard to manage their environment and sensory demands each and every day.  That their differences may need extra support if they are funding their emotions are really overwhelming-and that it is ok to ask for help with this.  And definitely find ways that they can spend time in their strengths, their interests to find fun joy, relaxation and things that like about themselves.

Building up a positive sense of self is not about inflating their ego, or making them believe they have superpowers, but it is part of developing a realistic, but optimistic view of themselves to help them build resilience and hopefulness.

Kate x

Published by Kate French

Clinical Psychologist; expertise in autism and child and family psychology.

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