My daughter, Charlotte, is autistic.
Since her birth in August 2013, Charlotte has made a monumental impact not only on myself, but on the lives of those around her. Sometimes, however, people may be unkind, sit in judgement or fear because Charlotte may behave in ways most people do not generally understand or accept.
This is something I am learning, and something I am working hard to change. I know I will never change the attitudes of everyone as some people might remain ignorant. I see that as their choice. Their loss.
To those who are genuinely trying to understand our journey,these are some things I’d like you to know.
We don’t feel sorry and neither should you.
I know the immediate reaction when somebody says they are ill or in pain can be to say, “I’m sorry,” but that’s not what’s happening here. Charlotte does not “suffer from” autism. It is not a disease. It is a disorder, and there is a big difference.
I often hear “eliminate gluten from her diet,” or “take her to an acupuncturist,” when people learn Charlotte is autistic. While perhaps the advice is well-meaning, it is nevertheless misguided. I am open to trying most things, so long as the risks do not outweigh the benefits, but I need to be very clear about this — ASD is a neurological condition. It cannot be “cured.” Nor does it need to be.
What I don’t say, and what is also true, is that sometimes it is not easy. Parenting isn’t easy. Parenting a child (or adult) with a disability just adds a whole extra layer of complexity. If I admit that sometimes this isn’t easy, I need you to know it is not a reflection of my little girl or how I feel for her. Admitting we have bad days is just admitting I am human. We all have bad days. It doesn’t mean I don’t love my daughter more than any amount of words can truly express.
4. ASD is a “Spectrum.” It varies widely.
As the name suggests, ASD is an incredibly complex neurological condition which has a huge scope of factors that are relevant to some and completely irrelevant to others. Just as you and I have differences, preferences, and unique ways of seeing the world, so do those with ASD.
5. Autism is not something my daughter will grow out of.
She is a child with autism who will grow to be an adult with autism. Sometimes it seems there is more tolerance for children with autism and other health challenges than there is for adults with the same diagnosis. Children with autism grow to be adults with autism. Their neurological makeup will not change. Who they are will not change. Nor should it. Everyone needs understanding, no matter their age. No matter their condition.
6. Maybe the world needs to be more tolerant.
My daughter does not need to change. Since Charlotte’s diagnosis, we have been bombarded with information about how we can make Charlotte conform to societal norms and expectations. There are many societal norms that Charlotte doesn’t understand, and I struggle to see how I’m supposed to claim I accept her for who she is if I’m constantly being told to try to change her.
While I acknowledge there are some things we need to reinforce to keep her safe, there are many things that are merely for the comfort of others. Eye contact is a classic example. It is not necessary for communication. We can communicate effectively without it.
While we are encouraging Charlotte to make eye contact, we are doing so mindfully and compassionately. Ultimately if it distresses Charlotte, we will not pursue it. We praise her for moments of eye contact and are genuinely grateful for those special times.
7. A behavior that seems out of place to you might have a very real place in the life of someone with autism.
I remember when Charlotte was still a baby, she started shaking her head from side to side. We thought it was a phase she would grow out of. We thought perhaps it was due to her hearing loss (as Charlotte also has permanent hearing loss in her left ear), and she was experimenting with how she hears sound, and in turn, experiences the world around her. Looking back, I can now see she was “stimming” (self stimulating or sensory seeking behavior) from an early age. She will be 4 in a few short months, and she still shakes her head regularly. She often closes her eyes to increase the impact of the sensory experience.
It may seem like an “odd” behavior, but it’s calming to Charlotte, and it is another way of expressing herself. It is not different in our world, and there is no reason why it should be “odd” in yours.
8. Just because Charlotte cannot speak with words does not mean she doesn’t have anything to say.
When I mention Charlotte is nonverbal, some people immediately assume she might have an intellectual disability. Many assume she’s like a baby, and treat her as such. Charlotte is not a baby. She is clever and coy, funny and caring. She has a lot to say, you just have to be willing to understand and observe.
A sideways glance from Charlotte says what words could. The combination of a look, body language and actions communicate what a verbalized sentence could.
The greatest need for interactions with Charlotte is time. Take time to sit down with her, be gentle with her, talk to her like any other little girl, and wait for a response. I guarantee there will be one. It may not be immediate, it may be subtle, it may not be what you expect, but it will be there.
9. Different interests are not wrong.
Charlotte has often had different interests to other little girls and typical children her age. She doesn’t play with dollies or understand dress-up. Typical toys in typical ways often hold little or no interest. Give her anything new and in all likelihood she will interact with it the same way she does with most new things — she will feel it, bite or lick it, and turn it over and over. This sequence of events is highly misunderstood. It is actually a clever way of interpreting the world for a little girl whose sensory systems seem all jumbled up.
While playing with a doll may hold little appeal, she loves nature, and finds time outside soothing. She could spend hours feeling the breeze in her hair and tearing up leaves and grass. She loves water, and could spend all day splashing it or kicking her legs in it while she lays on her back. These behaviors and interests may be a little different to what is typically expected, but that doesn’t make them wrong. It just makes them different.
10. Sometimes we feel lost and helpless, too.
We are all learning. There are many times we get it wrong. We don’t have all of the answers, all of the time. We are still learning to interpret Charlotte’s behaviors, identifying her needs and ways we can best meet them. It is a process. It takes time, and patience, and compassion.
We aren’t experts, we are just people willing to learn and doing everything in our power to understand our beautiful little girl. We don’t always get it right, but we persist. It is our openness to difference that is our greatest asset. Our daughter has given us that understanding, and for that, we are eternally grateful.
11. Charlotte is more than a label.
Please don’t make assumptions based on what you think you know. I can’t begin to tell you how many times a doctor or carer reads Charlotte’s file and forms assumptions based on those labels. They see words such as “autism,” “nonverbal,” “not walking,” “global developmental delay” and “chromosomal abnormality.” They see “hearing impairment” and “vision impairment.” They immediately paint a picture of a child who can’t move, can’t communicate, can’t interact. They paint a picture of a child with no personality, and nothing to give.
If there is one thing you take from this post, know this: everyone has something to give.
We just have to be willing to look, listen and interact without judgement. We have to be open to gifts given in unconventional ways. Charlotte may not speak with words, but she can communicate. She may be a little girl, but she has a big personality. She is fierce and determined, but she is also soft and kind. She will sit beside you, and her warmth will envelop you. She will unexpectedly reach for your hand with such softness, and hold it so gently, so carefully, as if it were the most important thing in the world — and in that moment, it is the most important thing in her world. When she gives, she gives abundantly. She gives everything, all of her. Unquestionably. When she looks into your eyes, her eyes seem to pierce your soul. Sometimes the intensity of her gaze takes my breath away.
No, Charlotte is not a sum of labels. She is the most complex and incredible gift who I am proud to call my daughter. Part of me lives in her, and I find that to be the most incredible and humble knowledge of all.
We are human, first and foremost. Difference is not something to be feared, rather it is something to be embraced for the incredible gift that it is.
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Thinkstock photo by Halfpoint