It’s just not autism speaking
May 18, 2006 by Kristina Chew, PhD
Filed under Autism Organizations, Disability Rights, Family, Media, Parenting
Talk about obsessive—this is my 5th post about the Autism Every Day video. Wade at Injecting Sense posted a message that Michele Iallonardi, one of the mothers on the video, wrote into an autism discussion list at More About Autism Every Day.
I was glad to get to hear one of the mother’s own words, unmediated by Autism Speaks. My own main critique of the video is this: The video is about autism parents speaking about the every day difficulties of their life raising a child (and children–Ms. Iallonardi has three autistic children). The perspective of the children–of autistic people–is not in the video. It is suggested by the parents in the same way that I try on Autismland to suggest what I think is going on in Charlie’s mind. I might be wrong but–like the mothers in the video–I have to try.
But the video is not autism speaking. It’s others (many who know a lot, and have been through a lot) speaking for autism.
Jeff Stimpson
Jill Cornfield
Beautifully said, Kristina. The video gaves us some glimples of the meltdowns and how difficult they can be for parents. I think it’s far more difficult to be the child trying to ride out the meltdown. To the child experiencing a meltdown, everything they are experiencing is real and filled with tension. Why else would they be having a meltdown in the first place?
What we don’t get to see is what the moms and dads and sisters and teachers and weather… whatever… are doing to cause the meltdown. The moms look like they are going to force their children, especially in the case of the heartless/witless Allison Tepper Singer, discussing a murder suicide plan with the previously intended murder victim standing silently within earshot behind the previously intended murderer/mother. Ms Singer makes sure to add that the only reason she decided to go on living was for the sake of the “normal” daughter who doesn’t even act normal! How normal is their father?
What are these parents doing, stress-wise, pressure-wise, drug-wise, forcing pills and potions wise to instigate the melt-downs?? We don’t know. How about the pressure for the kids to misbehave on camera? How about the pressure of having a camera man or camera crew their in the car with you? We have no idea why that beautiful daughter of Singer’s is crying in the opening shot. Maybe she’s being dropped off at a school where she’s being sexually abused, but no one has figured that out yet, or where she’s verbally bullied or assaulted by noise….
All I can say to that batch of females wailing and eviscerating themselves over how awful autism is so that stinking Autism Speaks COULD RAISE MONEY from jet setters who could care less, is get over your petty stinking, whining about your lost careers, entitled attitude. If they weren’t blowing money on stupid unproven unscientific therapies they wouldn’t be able to whine about how poor they are. Believe me ABA is a boondoggle to the extent that they convince parents to have therapists coming in 40 hours a week collecting data on and training poor kids with big promises of “its the only hope for your child…”
Autism Speaks stinks on ice.
Well.
I think Camille said it for me. And I was so looking forward to another rant about it.
*barfs on Autism Speaks, thinks she’s allergic*
It’s a one-sided video, to put it mildly, and I do think it’s geared to raising money (and lots of it) by pulling at the heartstrings. What bothers me is how the majority of parents seem to like, or want to like, the video—they see it as some sort of validation.
A lot of work to do to combat that.
Why do you write about Charlie 2 and 3 different posts a day? Why do you share the stories of his melt downs, struggles, broken Ipods? Why do you share your struggles with Charlie’s age discrimination and finding a new school? Isn’t that you also need “validation” for all you do? You get comments from people to encourage you to continue doing what it is you are doing and to praise your works. If you didn’t need validation, you wouldn’t need a “comments section”. We all need it for direction in life. There is nothing wrong with it.
I have mixed feelings about the video myself. But what I have learned, is that Autism knows no ethnicity, it knows no socioeconomic status, it knows no specific country. What it does do, is that it becomes a part of a families life. They do with it to the best of their abilities. My families life isn’t poor enough to qualify for any state aid for PCA’s, respite, ABA therapy,special autism schools, or the medically required speech/OT that Sam needs. And we aren’t rich enough to afford it either. We are stuck in the middle with our insurance running out and Sam’s lifetime benefits building up. I would love for someone to come in for respite care, to have someone I trust or could afford for respite care, to have ABA in my home that would also give me a little down time to get caught up on life. My husband and I provide everything, every minute of every day with little break. Yes, I am one of those mom’s who quit my passion in life of teaching the last 15 years (of which you made known your ability to work full time). You don’t know everyones situation. I have other children besides my son with Autism. I have a husband who travels extensively. With the therapy we do get a week and the services I am trying to provide for Sam on my own with my own ABA version (which is not rocket science for anyone in education), and the fact that I have an older child who needs a mom too, I had to stay home to keep life together, to be able to track all medical expenses and deal with insurance, to do our homework therapy from speech/ot.
I am educated, I have 2 BA degrees and MA in education. My husband is just as educated. We have been in youth ministry as volunteers for 15 years, dedicating hours a week as well. We look to others as if life is great. We know when and where to take our son to avoid melt downs in public. We are 6 hours from the closest family support person physically. Sooooooo, I found some of the video validating. For me, it shows what life is like for people in my community who don’t see that side of us (because we avoid it). It is validating for me, so family (that is not near our “every day” life)understands why we finally resisted our desire to not do meds and do that to get Sam sleep he has not had for 3 years. It is validating for me for all of those people who stare at me when I have to use a harness (which is a cute monkey one) on Sam during those times in places I know he will be overstimulated and “run” in an unsafe manner.
While I too struggle with some of the video, it was validating for me in the hopes that some of my friends and family will see the things we go through, but I was too insecure to share with them. I DON’T want a pity party. I am incredibly sound in my faith, and share my validations as glory to God. But I want awareness to those not familiar with autism to be more understanding when Sam is screaming in line at Target because I didn’t have time to let him finish following the line on the floor he found (not because people think he is spoiled and throwing fit because he didn’t get a toy he wanted, I would love for him to want toys and actually play with them). I want awareness, so that when I miss a deadline for the church newsletter or a budget report because I have had sleeplesss nights and days running to school and therapy and am exhausted that people can be a little more compassionate. I want awareness, so I don’t have to write any more letters to legislaters, to insurance companies, etc…explaining how important early intervention is in autism for simple things like speech and ot therapy to be covered for more that minimal visits.
All I am saying Kristina, is that it is so easy to judge. We really don’t know what the grass is like on the other side. The only reason I mentioned my education, our middle of the road income, and my other activities in life, is to share with you that even though I have been blessed with some tools in life, autism can still be challenging. Just think of the single parent doing this, think of the parents with several on the spectrum, think of those with limited resources (not because the don’t know how to get them, but are not allowed access).
Validation can be hindering, but it also can be helpful.
Godspeed in your journey, just remember we all come from different places.
Amen, Laura.
The best validation I need is seeing Charlie learning and moving along on the road to the good life.
Out of many, one. E pluribus unum.
just saw the film at sundance. I thought it was honest. I have worked with children with autism for 7 years and have a brother with autism, and I have witnessed pretty much all of what was in the film -from the children grinding their teeth -to parents expressing suicidal feelings. I thought it did a good job showing the reality of autism.
Thanks for noting all this here. I am hoping that Autism Speaks will make the new version of the film readily available to the public as it did the first.
Laura, Hi, I enjoyed reading your message, and I agree with alot of what you said. I have raised money, walked in Autism Speaks walks, and I did wonder, how I could get some of the money to pay for treatments for my son. But I never would have thought to bash and discredit there organization because of how they spend the money they raise. It just does not seem fair. They have been up and running for 2 years and they are grasping at straws like the rest of us, atleast they are doing something. I am a mother of 3 and I live in a small villiage where I have had to beg for help for my son. I have also quit my job inorder to raise my son and teach himi to the best of my ability. I have gotten him into a pre-school program that uses RDI and he gets 1 on 1. For 3 hours a day when school is in session. I have also done lots of things on my own in order to keep him learning. Right Brain Therapy and I detox him wiht mud baths. I spent the first few hours of today looking into another school that uses ABA based therapies in a very open learning, playfull setting that I have to wonder if this will be better for him. I have to investigate everything, he is a full time job. I do the same for my other children, except finding things and friends for them to play with is alot easier. I wonder everyday how I can get money for therapies for my son, and I look into what other people are doing. I think my son is doing great, he is a different boy then he was 8 months ago. But I do not know anyone elso who do the kinds of therapies that we do.
Chris