News and Knowledge

This post was originally published on  Respectfully Connected and is re-posted here with permission.

A lot of the messages parents and disabled advocates send to families are about helping us deal with our misplaced grief after a child has a diagnosis. Messages that encourage and challenge us to accept our children and find ways to work with their unique neurology.

I needed this so much a few years ago. Having no idea my child was autistic, I experienced a lot of uncertainty and fear, and I needed reassurance that everything was going to be OK.  

However, on the other side of the coin, I meet a lot of families who are totally onboard with acceptance of their children in all of their beautiful diversity. Families who support their children to lead the way in their interests, how they move their bodies, spend their time, and build relationships with others.

If that’s you, I have so much respect for you. It’s a different journey to my own, having struggled and struggled and fought my way to reach the acceptance that seems to come easily to you.

But what if you’re already on the acceptance bandwagon and now you’ve identified that your child seems a lot like the descriptions of children who are autistic, adhd, dyslexic, anxious, or neurodivergent in some way? What if you have always thought they might be, and it’s sat in the back of your mind like a nagging question?

Should you get your child diagnosed?

You feel unsure. It’s inviting a medical professional to look at all the ways your child doesn’t meet society’s expectations of typical childhood development. It’s going to catalogue all of their ‘flaws’, and people might start pushing you to enrol them in therapy you don’t even want.

You are trying to find a way through this that continues to give your child autonomy, respect and dignity.

You are doing pretty well meeting your child’s needs most of the time. You struggle sometimes, like all parents. You certainly don’t want to change your child. You don’t want to make them feel less, broken or othered. Better to avoid that label and keep on the path of acceptance of their unique quirks which you love and are managing OK. They are OK.

Right?

As an autistic and adhd adult, I can tell you that before I could name my neurodivergence, I knew I was different to girls at school, to colleagues, and other mothers. Despite the love and support of my family, and encouragement to walk my path in life, I always felt isolated in my differences. I certainly did not feel worthy of celebration. It wasn’t until I identified and named my differences (neurodivergent, autistic, adhd) that I found a place I could belong, people I could connect with, and an antidote to the isolation I felt.

I can also tell you that the process of diagnosis for myself and for my children was not a positive one. Placing our identity and knowledge of who we are at the hands of a psycholoigist or paediatrician and getting a report that lists all of our differences as problems was really hard.

What if there’s another way? What if we totally took diagnosis out of the equation for now? I invite families who are already far down that path of unconditional love and acceptance to consider that you can still acknowledge and name your child’s differences. Autistic. ADHD. Dyslexic. Without a diagnosis. Without shame.

Without needing to use euphemisms like ‘quirky’, ‘sensitive’ or ‘indigo’. Those words have a place. They are OK. But they might still leave your child feeling isolated in their differences, without the right words to understand their particular way of moving and thinking and playing. Without actually seeing themselves reflected in the children and adults around them. Our efforts to avoid using autistic, adhd, anxious, dyslexic or neurodivergent to save them a ‘negative label’ or a negative experience with medical professionals, can actually create shame and isolation.

So let’s put the question of whether you should get a diagnosis for your child aside for a moment.

I know from my experience (and the experiences of many other families) that we can give our children:

• Acknowledgement of their feelings of difference and struggles in the neurotypical-majority sensory and social world.
• words to name and describe the unique ways they play, communicate, move, relate and think;
• community to belong where they can see and know peers like themselves and adult mentors and role models; and
• celebration and pride in who they are.

And it’s a wonderful thing.

There is a pretty amazing community of neurodivergent people and families out there. We know more than any doctor about the beauty of our brains, about our struggles in the world, about how we can best live and take part in our communities. We celebrate and have pride in our differences. We are happy to welcome, support and encourage and be role models for ‘our people’. We might struggle, but we know why, and we know we are not alone.

Supporting our children with self discovery doesn’t interfere with our intentions to give our children autonomy, respect and dignity. Introducing our children to a community they can belong to, and celebrating their identity isn’t counter to our journey towards deeper love, connection and acceptance of our children. We needn’t fear labels. We can in fact, celebrate them.

What if I am not sure? Find autistic people. Find dyslexic people. Find people with ADHD. Find people who also share your child’s gender, culture, and community. We are online. We’re writing about our experiences in books and blogs, talking about them on videos and drawing and painting and sharing about them in our art. (We are here at Respectfully Connected. Hello! Welcome!).  We can point you to more writing and words and ideas that can help your child and your family find your way. You don’t need a medical professional to be your gatekeeper for knowledge about autistic experience or thriving with adhd or dyslexia.

And what about diagnosis?

You haven’t answered my question. Should I get a diagnosis for my child?

Here’s the thing: If we have already moved through the process of self identification with your child, that is-

• acknowledging our child’s differences
• giving those differences a name without fear or shame
• finding peers and their community, and
• truly celebrating their identity

then that medical professional holds less power over us and our child.

We can put health professionals back in their rightful place supporting our children and our families to get access to health information, treatment and resources we need. For example, we can tell them that we know our child is autistic, and we need them to – write a letter that helps us access funding, prescribe medication to assist with their sleep, investigate a particular health concern, or refer us to a psychologist to help with their anxiety.

In your community, the value of a formal diagnosis depends on what that diagnosis gives you access to.

In some places, a diagnostic letter and doctor’s referrals give your child access to much-needed funding, supports and formal accommodations. If that’s the case, and you decide you need that diagnosis, find the easiest path to getting a diagnosis with the least chance of dehumanising your child in the process. Every community is different. Ask people in your community who have been through the diagnostic process for recommendations of ways to get a diagnosis that are easier on your child and yourself. Get what you need out of the system in the safest, gentlest, kindest way possible. Be a resourceful advocate, just as you do when you access healthcare for your children any time. But don’t place your child’s identity in their hands. You’re already figuring that out with your child, just like you have since they were born.

If you’re in a community where that diagnostic process gives you no value, or where you can’t find a way through the diagnostic process that is safe for your child or your family, you might decide not to go ahead with getting a formal diagnosis. That’s OK. In fact, that’s great! You can still give your child words to describe who they are – autistic, adhd, neurodivergent, anxious, dyslexic. You don’t need a diagnosis to use those words. You can still support your child to find their people online and in your local community. You can definitely still celebrate who they are.

Whatever choice you make around diagnosis, I invite you to please separate out your concerns about diagnosis from the benefits of your child truly knowing who they are and finding their community as they grow up.

About the Author

Briannon is a queer, autistic social worker and scientist who lives in Australia with her wife and three children. All of Briannon’s family are neurodivergent. Briannon is currently home educating her three children. Briannon is Director of community groups Autistic Families International and NeuroDiversity Connect and a writer at Respectfully Connected.