Many parents are scared of “labels.” So scared, they don’t pursue a diagnosis for their child because of the fear their child will forever be defined by their diagnosis.
I understand this fear. I once shared it too.
There is a reason we did not initially share our daughter’s Asperger’s diagnosis with her or with too many people around us.
Our beautiful Matilda x
We were scared she would be defined by her diagnosis – forever limited by her label.
In fact, I once wrote the following:
I am trying to remain positive and focus on what we can do next to help her but I am worried about “the label”. With our son, the label that came with the autism diagnosis was welcome, it helped us obtain funding and assistance for him that he needed. He clearly has special needs and I have never hidden these to his teachers, friends or family.
My daughter is different. She doesn’t appear to have any special needs and while a label might help the school obtain extra aide time, a label can also imply certain expectations of function and behaviour. I don’t want her to be judged by the fact she has Asperger’s – I want her to be judged on what she can do as an intelligent, funny, affectionate, unique little girl.
She may be known by a different label today, but to me she is still my little girl from yesterday – and I will always love her, just as she is.
I wrote these words nearly exactly 5 years ago. I’m not sure when my thinking changed. But it did. Slowly and irrevocably.
I think a lot of the change came when I fully accepted the diagnosis myself.
For a long time I unconsciously thought the diagnosis, and the label that came with it, was indicative that something was wrong with my child. I never said this aloud and I never even consciously gave it a lot of thought at the time, but looking back, I can see that was my headspace in the early days.
Now I see the spectrum as a wonderful place of clever thinking, innovative ideas, boundless creativity and unique perspectives.
There is nothing wrong in any of that. It is just a different way of thinking and viewing the world.
Yes, there are challenges with an autism diagnosis – I live these challenges everyday so I know our challenges first-hand.
However, now I’ve come to accept my children for who they are, the challenges are less daunting. I realise the challenges are tied innately to the way they interact in the world around them and I can usually do something to help them.
I’ve since come to realise that a diagnosis, and the label that comes with it, should not be viewed in a negative way at all.
Instead of defining someone and their abilities, I believe a label actually enables and empowers.
- A label provides access to help, support and assistance. Without a diagnosis, people cannot receive funding to help meet the costs of care. They cannot apply for assistance at school. They cannot receive benefits they are rightfully entitled to. A label allows them to access the help and support they need.
- A label is the key to understanding and acceptance. A diagnosis and a label can provide answers and promise help. As I’ve described above, the label, even though I feared it, allowed me to fully accept my childrens’ conditions and understand them better. We have a far better relationship now there is a label to explain their needs and requirements.
- A label is a sign of action, representing the first step in moving forward. Seeking a diagnosis and a label is a proactive step, recognising there are unique difficulties and making a move to address them. Once the diagnosis and label are accepted, it is far easier to move on emotionally and make real progress – believe me.
- A label allows people to find their tribe and their community. A diagnosis helps families congregate – to find others in a similar situation. There are support groups, in real life as well as online, which can only be accessed with a diagnosis. A label provides entry to these groups and also represents a common link, bond and connection.
- A label can help people take ownership of their condition. Many people come to accept their diagnosis and feel a sense of pride in their label. My kids are proud to be on the spectrum. They relish “being different.” For them, it’s a source of pride and it’s helped develop their self-esteem and self-respect. They know they are different and they are OK with that.
In the end, a label is just a word. A way to categorise similar things.
Yes, words are powerful. They can cut, wound and stab just as deep as any weapon.
However, words can be owned.
They can be claimed.
They can be reformed and remade.
We all have the power to reclaim the meaning of the word “label.”
We can change the negative connotations associated with it.
We can recognise it for what it is – an enabler.
And we can all do our bit to change the way labels are seen in the future.
We owe it to our kids, our families and our communities to tackle the word, head on, and not let it stare us down.
We shouldn’t live in fear or avoid a diagnosis and the label that may come with it. We should be doing everything we can to identify our kids’ needs and doing everything possible to address them.
Because how can we help them if we don’t know how?
That’s why I truly believe labels don’t define. They enable.
Would you like more support as a special needs parent?
Subscribe to Positive Special Needs Parenting to receive updates, advice and support from someone who's been there (and is still very much there!)
Acceptance is a beautiful thing. I’m sure apart of that was seeing and feeling a supportive community of like parents and children out there and seeing how they were getting on and seeing they were mostly doing okay if not great. I think sometimes not admitting our reality or struggles effects our integrity and getting on with how we really need to forge a way forward. I’m glad you’ve found the place that you’re at xx
Wow these are powerful words, and so very true. It makes me happy every time I read words like these that both mirror my own perspective and also remind me to remember their truth. I was the same with my son as you were with yours, he obviously had special needs and the diagnosis was a welcome door to help and acceptance, but i do understand that initial reluctance with an aspergers child. I always look to my daughter who has just turned 2 and wonder (although I haven’t seen any signs yet) and think that it would be quite the different kettle of autism if she turns out to be on the spectrum. I know that I won’t be afraid and that there is, as you say, such power and value and the label. Thank you for writing this, I’ll share it on my pages x
I think the same could be said for many labels. They don’t have to define us but it’s wonderful that they can help us. I think people sometimes forget that labels like this are just useful terminologies, appropriate in certain discussions, and not signs we must wear around our necks.
This is an incredibly important and empowering perspective. I hope every parent reads this.
I like to think of labels and diagnoses as part of our ‘ingredients’ – they certainly don’t define us but they do make up a part of who we are :).
Visiting from #teamIBOT today.
A powerful message and a great way to look at things. My daughter has dyslexia and being able to define that has meant that we are now able to help her and she also knows she is not alone.
This is so true Kirsty. Labels can help and empower us if we allow them to but they can also define and limit us. I am finding that with my mental health dx that some people find the label difficult to cope with. Though for me it is helpful because I can access the right support.
For my own mental health diagnosis, a label meant I had a ‘reason’ for feeling and acting the way I do. I didn’t feel like I was abnormal anymore.
I’ve found that most people who go on about labels in a negative way are often not diagnosed themselves. Not how you’ve expressed it but those who often comment on articles about autism/adhd/mental illnesses. It would be like me telling someone with a wheelchair that they should be grateful they can get around, while ignoring their feelings about loss of independence etc.
Well done! Beautifully expressed and I agree wholeheartedly. I’ve always said to people not to be scared of the label, but to use it… and that you don’t need to tell it to everyone all about it, use it judiciously.
I think I’ve mentioned before that we suspect Mr 22 might be Aspergers. Probably only slightly, not enough to have had it diagnosed or picked up when he was at school. Just from living with him all these years and reading, I can’t help but wonder. He hasn’t definitely received the “label” but knowing it could be has helped me infinitely, to know what I just might be dealing with x
Such great perspective you have Kirsty, and I’m sure this blog post will help many parents who are still struggling with the labels. It’s certainly opened my mind up to see things from a different view.
So beautifully said. Labels can be empowering in all the ways you have so eloquently stated. I can totally understand the initial fear and resistance to them at first though, and it’s really interesting to see how your views have evolved over time.