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Why Labels Aren’t Necessarily Bad

Update, 12/12/12: I wrote this a few years back, about a year after my daughter was diagnosed on the autism spectrum. That first year was incredible – Her diagnosis qualified her for our local developmental preschool, where we met a nurturing and welcoming team of teachers and specialists who helped her blossom and thrive. 

The more I read these days about the neurodiversity movement, the more I feel called to go back to re-read things I’ve written in the past. It’s interesting to see where I need to adjust my vision, where I’ve done a poor job of articulating myself regarding my feelings about autism. In that light, I’d like to clarify something in the piece below. I wrote that I was sad-happy or happy-sad the day I drove us all home from my child’s diagnostic appointment with the pediatric neurologist, and I think this was true. But I didn’t explain the happy or sad part of that.

I was happy because I had been given a key to understanding my child, and I knew that she wasn’t alone, that she’d grow up to realize this aspect of her being connected her to a group of like-minded people who would truly understand her, a real community. I was sad because I wasn’t at all sure I’d be a good enough parent for her. I was sad because I didn’t know how we’d ever afford the sorts of things she would need to support her (and I didn’t know yet what those things would be, although I suspected that pricey time with horses would figure in there prominently). I was sad because I was worried that she’d have extra pain and struggle in her life because the world isn’t always kind to people who are on either side of the center of the big bump in the middle of our collective bell curve of neurology. The happiness I felt was something new; the sadness wasn’t – I knew my child, and I knew that she was frequently frustrated and overwhelmed. 

I also left out a detail that I knew that the brilliant Michele Bombardier, a speech and language pathologist who was also part of the panel, would bring it up: There is solid evidence that parental concern about a child’s development is highly predictive of the existence of a developmental issue. In other words, any time a parent says they don’t think their child is developing typically, the child’s health care providers should perk up, take that seriously, and start gathering data to illuminate the truth about that child’s development. Sadly, it seems to be common for doctors to say things like “Don’t worry” and “Let’s wait and see” and “Oh, no, I’m sure everything is fine” in response to parents’ concerns. That’s certainly what happened in our case, and that meant extra years of frustration for my child. I will link to the studies re: parental concern and developmental issues as soon as I have time to track them down again – They really do exist. Why does it matter? Because the earlier a parent understands their specific child’s needs, the earlier they can start to meet them; children whose needs are met are happier, happier children grow well into themselves, their most robust, wonderful selves. 

I love public speaking, and I used to be able to breathe and speak and enjoy myself while talking away to a roomful of strangers. But whenever I talk about this topic, I struggle to breathe, to keep my voice from wobbling, to read my own words without stumbling over and over them. Anyway, here’s what I shared:

When my daughter was almost 5 years old, after many years of asking her various doctors for explanations and assistance, she was diagnosed with Asperger’s Syndrome.

I was so accustomed to being told that my child would “grow out of it”, or that my first-time-mother eyes were over-reacting, I fully expected to leave the neurologist’s office with more of that same message. Still, I can’t say this diagnosis was much of a surprise to me. It explained the things I’d been pointing out to friends and family starting during her newborn days: Her active avoidance of eye contact, her lack of babbling, her obsession with ceiling fans, the long lines of plastic animals stretching across the living room (arranged by species, color and size, feet all perfectly aligned), her very negative feelings about playgrounds, play dates, and parties. The afternoon we drove home from our diagnostic appointment with the pediatric neurologist, I was filled with overwhelming relief, and a sort of giddy happy-sadness, or was it sad-happiness…I’m sure there’s a German word for this complex emotion, but everything I felt was shot through with relief: Relief that this label would bring with it access to all sorts of professional help; relief that now I’d be able to focus on articles, studies, and ideas that would help me understand my child; relief that there would be no more midnight Googling of keywords and fragments of the whole that brought terrifying misinformation; relief that I would finally be able to help her to be a happier person, to have a happy childhood.

I know that not everyone wants an autism spectrum diagnosis for their child, but the idea of a label didn’t scare me. I was more worried about the labels my child was already getting from her peers, teachers, and family members in the absence of a more official explanation. We needed help, and I was open to anything that would articulate how my child experiences the world, how to meet her where she was, and how to help her realize her potential. Being diagnosed on the autism spectrum didn’t change my child, and it didn’t change my love for her. My goals as a parent are the same as they were when I first felt her rolling like a sleepy, tangled eel in my body, or when I first held her glowing body in my arms – I want to be the sort of mother who can help her become a happy person, a person with a love of learning, with a love for other people and trust in their love for her, and a love for the world that translates into acts of loving-kindness, a person who has a rewarding and happy life.

Fortunately for my child and for every other child diagnosed today with ASD, there has never been a better time to be growing up with autism. There are professionals in a wide variety of fields who will not give up, who are researching and working and experimenting, thinking in new ways, and this has brought us concrete help. There is a vibrant ASD community that is connecting people with ASD to each other in new ways, and that is helping those of us in the neurotypical world to understand that everyone, even someone who is non-verbal, has plenty to say, that everyone matters. There are other parents who are traveling the same path, parents who really do know what I mean when I say that our trip to the bulk department of the grocery store didn’t go so well, and who share my deep joy when things do go well at a birthday party.

All of this has added up to mean that my child is much happier today than she was 3 years ago; it means that she is growing up in a society in which autism is no longer invisible, and she benefits from this increased awareness, this growth both in compassion and in research; it means that I am a better parent because I better understand my child, and have found ways to nourish her, body, mind, and soul.

Please, if you suspect that your child may have autism, don’t give up – Be assertive, be bold, know that you are not alone, your child is not alone. There are people, out there in the wider world and right here, who will stand with you, who can help in many ways.

4 comments on “Why Labels Aren’t Necessarily Bad

  1. Wow. That takes your breath away. What a wonderful daughter you have…and she has a wonderful mother.

  2. What an interesting post. I’m a school psychologist, and I’ve been struggling with this issue around labeling for the last 30 years. We are often seen as gatekeepers to services for students who have disabilities. (I hesitate to use the term “disability” as that can also be a minefield – the students who qualify for services would be failing without individualized instruction). Merely labeling, if that’s all we did, would not be good. With some labels come expectations that might be limiting. Children are more than their “label”. But identifying a disorder/disability can bring access to services specifically geared to that child’s needs, and can expand that child’s horizons rather than limit them. I feel like, after the work we expend to get an evaluation completed, we have to expend more work convincing parents, staff, and the student what the disability means and what it does not mean. But the label empowers families (and students) to gain knowledge and to be effective advocates. I am fascinated, and excited, by the pride many are taking in their “labels”. There are different ways of thinking, that give advantages in many situations. We need society to value non-neurotypical ways of looking at things; we need wide knowledge of accommodations. As an adult, I have my own labels to deal with, like being transgender, or having agoraphobia (in the past). It took me a long time to get past the self-loathing, and see myself as valued for being me, labels and all. Thanks for your blog.

    • Jill, thank you so much for this comment! I agree, just labeling and leaving it at that would be horrible, as is seeing a label as the sum total of someone’s ability/potential/worth. When it comes to kids on the spectrum, I know several whose parents are so resistant to the idea of having their child “labeled”, their kids are becoming more and more severely impacted as they grow older and their NT peers make leaps and bounds in terms of social communication development. This breaks my heart. A side effect of this parental fear of the label that comes with a medical diagnosis is that these kids get other labels, like “weird”, “withdrawn”, “troublemaker” “%*&#” etc…The way I see it, it’s a whole lot more helpful to get a medical diagnosis, assuming your child meets the clinical definition, which comes with evidence-based support, than to get the more subjective labels from peers and uninformed teachers/family – Those are the ones that really seem to threaten the development of resiliency and a loving self-image. I was raised in a family that took pride in and openly discussed the labels of its members, and I hope to pass that along to my kids. They are who they are, and these labels are just quick ways to describe aspects of their selves, not their worth, or their potential, just parts of who they are, how they experience the world. I want my kids to live in a society in which all people are valued, so I write and talk about this because it feels like one way that I can stop the historical culture of silence/shame around autism diagnoses. I’ve been told by some people that I shouldn’t do this, not with my real name attached, but that just doesn’t sit right with me. I get very uncomfortable around silence like that, thanks, I’m sure, to my very loud family of origin!

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