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.
Charles:
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.”
Vijay:
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.
“The ideal aim of the unsuccessful is to be normal.” Carl Jung.
I love that quote.
I have a son who could be said to have Aspergers because of his unique behaviors, it’s just a path we personally chose (after much research) to not pursue. For me, call it whatever name, all it is is human evolution happening right before our eyes. It’s the next step in pushing civilization forward. Look at our planet, our societies – we NEED people who are more sensitive, who need less stress in life, who see things in a different way.
So what some people call a astronomical rise in Aspergers, I call a creative mind phenomenon – there are more creative minds being born into a society that, for the most part, doesn’t yet appreciate creative minds, especially in children.
I LOVE this post! I too have a daughter within the spectrum. Because my daughter doesn’t need speech therapy & is gifted the school system blamed my parenting. Once we finally got a diagnosis all the school system would do for my daughter would be to put her in special ed. That would have destroyed her self esteem! She’s quirky & has behavior challenges, but she is certainly not special ed. I home schooled her for a couple of years & was lucky enough to find a private school that is willing to meet her challenges & do so every day. We can’t exactly afford private school, but my daughter needs socialization. Just because social skills are hard for her doesn’t mean she doesn’t like to or need to be social. Despite the fact that the public school system refuses to meet my daughters needs there is no financial help for the tuition that puts a strain on my family. The last time I checked 1 out of every 150 children has been diagnosed with ASD so why is the public school system doing NOTHING to address the needs of these children? Society DOES need to change! These kids have a lot to offer & have wonderful personalities! Plus with more & more children being diagnosed every day ASD is going to be the new ‘normal’.
Here’s my take on the 5 myths
Myth #1: autism=”retarded“.
My eldest son falls within ASDs – as far as being retarded – hell no! that kid is as smart as a whip, if there is something that you do not want him to learn, do not demonstrate it in front of him, he’ll have it down pat in minutes. Yes it can be dangerous but on the other hand he learns very quickly that way.
Myth #2: all autistic kids just sit and stare blankly all day.
Don’t we all, its called day dreaming, some just like to stay in that state longer than others, sure my son does that, but he’s pretty imaginative.
Myth #3: autistics can’t speak at all.
Hah – 450+ word vocabulary at 18 months old, and no these are not 3–4 letter words – 18 month checkup with the pediatrician “Dr can I see your stethoscope” – seriously he said that to the Dr and she was aghast that he could speak like that let alone know the correct term for many of the instruments in the office.
Myth #4: autistic people can’t show affection through hugs and kisses and snuggles.
Uh okay, our son is perfectly able to do this.
Myth #5: autistic kids can’t run jump or climb.
Two words “Acrobatic” & “Monkey” the kid can move!
LOL
Maybe they will come up with a breakthrough fast tracked vaccine for autsim…
A vaccine, I hope you’re joking.
Society used to call people with similar traits “eccentric”, quite honestly we’ve probably had people like this all along, only now they receive a new label, zeitgeist… label everything and see if you can make something to sell as the cure – snake oil !
Okay I didn’t notice before but can we have another image besides the puzzle pieces? I know this is common autism imagery but it’s really not my favorite. Cate you are welcome to use any pic of actual Violet from my FB photo lib. We are not very secretive about stuff. We participated in a documentary called “Neurotypical” that is going to be making the rounds of the film festivals next year, so we have already resigned ourselves to a complete lack of anonymity. 🙂 http://www.neuro-typical.com/
Amen. I don’t believe “recovery” stories. I have yet to see any of them prove the “before” and “after”. Lets see the before videos, the stimming, lack of eye contact, lack of socialization, tens of theousands of dollars in therapy bills etc.
I have to be the check and balance in my household. If not, my spouse would have tried all the dangerous stuff by now like chelation( without proving metals are the problem first); homeopaths that have no credentials, DAN doctors that perscribe diuretics and steroids to a 3 yr old without any warning of side effects, IVIG etc. I will do no harm first but give all I can to get the best therapists around.
Ahhhhhh
Respectfully Paul… I have met many many recovered kids. Many kids including my own have benefited by a targeted biomedical approach toward healing. Many or most of our spectrum children have a myriad of bonafide medical health maladies and the maintream medical pharmawhores IGNORE them all “that’s just Autism”. The mainstream medical pharmawhore are NOT learning about how to care for our kids… think Paul, how do you get your continued education in your field. Well pal, it’s not happening within the medical community. FACT. So, you choose your heros, i’ll choose mine.
And please, DAN doctors do NOT “percribe diurectics and steroids” – that is what mainstream Dr.s do. And further, my own experience, i spared no expense on “the best of the best” therapy for my son. And “therapy” produced NOTHING beyond draining my bank account. I appreciate your skeptism, really I do. But the mainstream medical community FAILS to address this national health crisis. Everything non mainstream WORKED – he no longer stims, he speaks, his immune system is finally working.
No wonder why 80% of marriages end in divorce within the Autism community. I would have divorce you Paul. Nothing will stop me from healing my child, not even a narrow minded, sheep spouse.
Again, respectfully, Mother of a recovering vaccine injured child
Got it, Vij. The puzzles must get tiresome.
I hope you like the replacement!
Amazing post! I learned so much and truly appreciate it!
I think Sharon is joking. Violet was never vaccinated so just FYI that couldn’t be a factor in her being autistic. She nursed until she was a little over 3. She is insanely healthy. Rarely gets sick, and when she does she gets over it long before the rest of us.
My little grandson has just turned 4 years old and was diagnosed with apraxia at 2. He was delayed in his speech but learned sign language and now speaks well. He reads books about birds and is the family “expert” on this subject. He loves to keep track of the birds he sees at the feeder every day. He text messages me every morning from his dad’s i-phone. When he needs quiet time he seems to know it and we have made sure he has an “Office” he can go to so he can get time away from his sister (and who doesn’t need that!) His office is a large pumpkin box fromthe grocery store that is full of pillows and books.
Read Elizabeth Moon’s THE SPEED OF DARK about fiding a cure for autism and pushing persons with autism to ”be cured.” It is told from the point of view of the autistic main character.
Paul
I have two autistic children. One is a step child, the other is my own. I have avery unique perspective as my step child mother has pushed “acceptance” while I have pushed for both “recovery” and “acceptance for people to understand my son’s uniqueness.
I put my son on a gfcf diet, gave him supplements, tooke him to social skills classes, OT/PT/speech, music classes, etc. I use NO MEDICATION and have documented in a huge binder with “before” and now information. My son is reading on a thrid grade level in kindergarten, can now speak, no longer bangs his head, flaps, bites, screams, kicks and has friends. Yes he has quirks like being really into time and numbers, but we are not ashamed of it and try to get others to understand him.
My step son who is now 18 (his diagnosis was lighter than my son) cannot wite on is own, is struggling in school and will not be living on his own. Great we can all “accept” him as he is, but wouldn’t it be nicer if we could accept him as he lived and worked independant as an adult.
I believe you can do both, accept and help. My fear is that the “acceptance” theroy is a cover for lazy parenting.
I love to see people do both both. I am sure lot’s of kids would say as adults I like being autistic – I know my step son says it. Yeah, he likes not having to have a job, being cared for and to spend the rest of his life having someone else take care of him. Who wouldn’t?
It sadden’s me everyday about what my step son could have done with his life as an autistic person with LIFE SKILLS his mother’s acceptance theory robbed him of that.
I think most parents who preach acceptance *do* do both. We guide, and teach, and help, and accept, all at the same time. We don’t just do nothing, but we are also not trying to remove a person’s autism from them. My autistic daughter is 4.5 and is in preschool, and gets speech therapy and occupational therapy. We do a dairy-free diet (not to cure her of being autistic but because of digestive issues and eczema) work with her whenever we are with her to help her gain more independence, to communicate better, to gain new skills. So it’s definitely not lazy parenting. I also think it is impossible to compare two different autistic people. I have a very wise friend (an adult on the spectrum) who said “If you’ve met one autistic kid, you’ve met one autistic kid.” It’s possible that you could take two different kids, do the exact same things, and still get two very different outcomes.
i’ve really appreciated reading all of your perspectives. my son was diagnosed with autism 2 years ago, and we did do biomedical treatments when it became clear that ABA wasn’t a good fit for him (my own favorite myth; ABA is the only way). I am absolutely amazed at where he is now, versus a year ago! I’m not sure if he would be considered “recovered” but he’s certainly not where he was; he went from moderate-to-severe Kanner Syndrome to high-functioning Kanner Syndrome in a year’s time.
I do want to address the idea that parents try to “cure” autism so they can have a “normal” child. Unlike the school, my husband I had no intention of trying to do away with our son’s stims, repetitive behaviors, etc; all we wanted to cure was his crippling GI problems, which conventional doctors refused to acknowledge and had no treatment for, because its ‘normal’ for a child who eats regular meals to be severely underweight, with pale, yeasty diarrhea pouring out of him 4-5 times per day. Sure.
We could not afford a DAN! doctor, so instead we started our own course of treatment; a natural method of chelation and replenishment (high-quality vitamin supplements, probiotics, digestive enzymes, glutathione) and not only did it CURE his GI problems (I’m serious: not one GI upset in nearly a year!), he has no more food intolerance or eczema, and his autism is much milder than it was; other than his stimming and mild sensory issues, he is virtually indistinguishable from his peers as long as he knows what to expect. He is no longer violent and angry. He no longer spits on people or screams intermittently.
Like I said, we could accept him the way he was, but that would mean accepting the physical ailments that commonly accompany autism. We owed it to him to help heal those ailments so he wouldn’t be in constant pain; the recovery that came along with it was just a bonus.
Some friends of ours used to be against biomedical treatments, too. Until their 7 year old with Down Syndrome was diagnosed with severe autism; after years of not having appropriate treatment at his school (because he wasn’t properly diagnosed), his parents began biomedical treatments and the GFCF diet… within 4 weeks he went from absolutely no speech whatsoever (not even scholalia) to a vocabulary of about 10 contextual words! It was frightening to witness the “die-off” effect of the supplements, but seeing this child emerge from his lonely, silent world was absolutely beautiful.
pardon my typing errors; my shift keys are fried
We guide, and teach, and help, and accept, all at the same time. That is exactly what I am saying. By the way I have two autistic kids and an autistic nephew. ( I understand that each child is different) My concern is that my step son’s mother hides behind “acceptance” and did not try GFCF, music theapy, OT/PT etc. She simply thought it was too hard. Now she has a son who is 18 and cannot write. I watched as the CHILD used the acceptance speech to keep from trying to write himself!!!
I think maybe the acceptance camp needs to understand that some people are opting to just let their child stim all day and using this theory as a justification. I have seen it. That concerns me. Kids need life skills, period. Sometimes surpressing autism symptoms is need to do this.
oh and like cdr, my son has never had a GI problem since the day we went gfcf. He started speaking within a week of the diet!!! It concerns me that others might not at least try the diet because of the misunderstanding of “acceptance”.
I’m in the “acceptance camp” and work with my daughter constantly. I also allow her to stim when she’s agitated, tired, etc. If it’s excessive, I redirect her.
As a matter of fact, there are times every day that my “neurologically typical” children need to unwind and I allow them to do their own version of stimming. So do I.\
By the way, not only have I tried the diet — I’ve done just about every intervention possible.
It was only after accepting the fact that Hannah is classically Autistic that we were able to truly communicate and get to know how special Hannah is. I teach her and she teaches me.
Your tone is judgmental and out of line. Parents have the right to raise THEIR children as they want.
Just because I accept my daughter(S) doesn’t mean I’m going to stop raising, discipling and loving them.
Absolutely fabulous!! Concise, well-written, and I agree 100% with every point you made. Thanks for advocating for our kids.
Acceptance is nothing more than a comping mechanism to find “acceptance” of your child for yourself….kind of like how the God delusion is a way to rationalize death…nothing more nothing less. No normal minded parent wants their child to suffer or to feel left out and different. That’s just my opinion. Never give up on your child. Antibiotics and IVIG have been a Godsend for my son. He knows he acts different when he obsesses over things and tells me “mommy make the bad “bugs” in my head go away” I would never accept this life for him when he’s clearly bothered by it. Again, that’s just my two cents.
-Natasha
Mom to Jayden (3) PANDAS/congenital lyme & Braxtyn (1) as healthy as they come
I hope that some day they find a vaccine or some kind of cure for autism