A friend has a daughter with autism spectrum disorder (ASD). Vijay and her husband are so honest and open about their challenges with their younger daughter, and their intelligent perspectives have helped me understand a bit more about these families. She recently posted a note about acceptance and autism, and I thought it was important to share with you.
Vijay: I was asked by a friend,
Are you telling me that you would NOT be interested in a cure for autism?
And here is my answer:
Certainly dealing with Violet has been harder than dealing with a “regular” kid, but sometimes challenges are good for people to kind of push us to open our minds. It’s humbling to be faced with someone who is difficult to figure out. But that there is a lot to be learned from the experience. There’s no way to find out if Violet understands that she’s different, or if she would change that if she could. Yet.
These kids are different. So what should change? The kids? Or society?
The stereotypes are what made it take so long to get a diagnosis for Violet. Because we thought:
- “She can’t be autistic; she’s SMART.” Myth #1: autism=”retarded“.
- “She can’t be autistic; she doesn’t have seizures or zone-out spells.” Myth #2: all autistic kids just sit and stare blankly all day.
- “She can’t be autistic; she talks.” Myth #3: autistics can’t speak at all.
- “She can’t be autistic, she’s so affectionate.” Myth #4: autistic people can’t show affection through hugs and kisses and snuggles.
- “She can’t be autistic. She has such great motor skills.” Myth #5: autistic kids can’t run jump or climb.
So that’s why I want people to learn more about autism and what it REALLY is and isn’t before they get all hyped up about a cure.
If someone is nearsighted we get them glasses. Paralyzed? Wheelchair. And it is fairly recent that people had to fight to get businesses, schools, and places of worship to be accessible to people in wheelchairs.
What are we doing to make the world a more friendly place for kids like Violet? Not much.
What are we doing to be more understanding about these kids when they don’t thrive in the same settings as other kids? How many parents of autistic children have been looked at as though their kid was just being a brat? THAT is what needs to change. The snap judgments, the holier-than-thou attitude, the expectations of what is reasonable to ask of someone with sensory issues, auditory processing issues, and trouble with social cues.
And if you feel, as I do, that it’s genetic, and no more “curable” than Downs or any other genetic disorder, then it becomes a different dialog.
Yes, my child has sensory issues. So do I. There is no supplement or drug for that. You can help their brains and bodies function optimally, but you can’t change the fact that an autistic person is an autistic person. In my opinion.
There are limitations when you are a parent, and being a parent on the spectrum of a kid on the spectrum is unbelievably hard: you can’t always get the time away that you need, you can’t always connect with people when you’re feeling in the mood. But it’s so important to reach out for any and all help that you can. I am terrible at this! But I am learning. Remember the analogy of the oxygen mask? When the plane is going down, put your own mask on first and THEN help your kids with theirs.
It’s just that it’s not an ideal world for people like us who are more sensitive than others. Maybe some of us have found some “workarounds” or coping mechanisms. But we are still not served by a world that looks at you funny if you’re quirky. Some of us lurked on the outside looking in for decades before feeling like we had internalized enough of the unwritten rules of society to navigate different social situations smoothly. And we still have to hibernate sometimes to recharge enough to get back out there and function.
It takes guts to act the way you need to act for your own sanity. Violet doesn’t act “normal” and I don’t want her to if the price that she would pay for being “normalized” is too high. I guess what we’re asking for in this family is acceptance.
Maybe a person with Asperger’s might not want a hug, or even to shake hands or be able to make “proper” eye contact. Maybe they need earplugs or sunglasses in places where nobody else needs them. Know what I mean? Maybe there are sounds, smells, noises, textures that bug some people more than the average person. But maybe they have gifts that they should be allowed to explore.
Maybe they have a tendency to get depressed or anxious, but there are things that you can do to work on these things. Setting yourself up for success: living in a quiet place, getting enough rest, supplements, prescription meds, a support network, exercise, etc. Not always possible for things to be optimal! I get that. But it’s something to shoot for and not just be resigned that life sucks and then you die.
People on the spectrum have strengths and weaknesses just like any person, but they are different strengths and different weaknesses. Isn’t there a need for a diverse array of perspectives from all sides of the neurological spectrum?
For example, it would be easier at different times in history not to be black, or not to be jewish, but aren’t those diverse perspectives important? Yes, some parents would choose to have a “normal” kid if they could choose, but many autistic adults do not want their autism cured, and if they could start over would not want to be non autistic.
Taking the “cure” approach is antithetical to the acceptance approach. Those who are ashamed of their kids and want to “break” them of habits like flapping are taking a curebie approach. I am okay with Violet flapping. That doesn’t mean I’m better than those other parents, it just means that I’m no more seeking a cure for Violet’s autism than I would seek to cure her if she had Downs.
We want Violet to be the best she can be. She has special supplements and even prescription drugs that seem to help her sleep better, to be healthier and happier and less anxious. They don’t make her less autistic. Certain foods don’t agree with her and we avoid those. She is in school getting speech, OT, and so on. Not seeking a cure doesn’t mean we do nothing. And no, the Downs analogy isn’t perfect but it highlights the fact that you can’t simply undo the differences with some type of treatment. So many parents think this is possible, and I disagree.
That doesn’t mean we don’t move heaven and earth to help Violet communicate better, strengthen her weaknesses, and learn how to navigate the world. But we also feel that she should be more accepted and understood and not have to learn to pass as neurotypical in order to earn that acceptance.
Maybe she needs speech therapy, maybe she needs special care, but that’s fine. We take special pains for children and adults with other disabilities, we need to do so MORE for autistic people of all ages. If we are focused on finding a cure, we are not focusing on acceptance. IT’S NOT EASY. I don’t mean to paint this picture that it’s always sunshine and lollipops over here; it isn’t! But we love Violet so much and want her to be herself, because we feel that when you try to make a person be something else, there is a cost.
I’m Violet’s dad. Violet and I are very close and we are similar to each other in just about every way. I identify with her and her behaviors so much because I used to and still do (not all, of course) those behaviors today.
I have spent a huge amount of time in raising Violet and it’s been the most challenging thing I’ve ever done.
Yes, I wish she would look me in the eye more. Yes, I wish we could have a conversation. Yes, I wish she could tell me how she feels or what’s on her mind. These are all things I want dearly for her and me. I can honestly say that being with her has brought me so much joy, and not only that, but an incredibly unique and wonderful perspective on my life.
I’m very conflicted about her Autism too. There’s nothing about this that’s black and white. She has taught me so much about myself. The things of which she is capable are so incredible. I have no major point here except to say that, like Vijay, I think we need to look more closely at why we are trying to destroy. I read something today that seems appropriate to quote here.
The author, after being accused of saying something weird and “abnormal” says, “That’s the first normal thing I’ve said in weeks. The rest of the time I’m feigning twentieth century lunacy just like you are. So as not to draw attention to myself.”
From another parent of a special kid (not that they aren’t all special, lol, but a kid who has been through a lot of surgeries and other challenges): “I feel that she has shown us all what we are capable of, and brought out strengths that we never could have had. But now, we’ve got them forever. So our life’s work from now on is to return the great favor to her and have our turn to show her what she can do, and help her to achieve her full potential in life.”
I’m not opposed to autistic people getting every advantage to try to be the best they can be. But self-esteem can be fragile, and telling a child they are broken and need to be fixed can be a tricky line to walk and still have them emerge unscathed from that.