My Realistic Take On Suzanne Wright From Autism Speaks Comments…
November 17, 2013
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Now Reading: My Realistic Take On Suzanne Wright From Autism Speaks Comments…
November 17, 2013
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).
56 People Replies to “My Realistic Take On Suzanne Wright From Autism Speaks Comments…”
Way way way late to the party here, but this post really touched a nerve. Over the years I have read so many comments made by people with (self-reported) Aspergers and their parents, shaming anyone who would say that autism is anything other than a beautiful gift. Easy for them to say. Let them try living in my house for a month enduring constant meltdowns, threats, and violence. Let them experience getting headbutted in the face by my kid while he threatens to kill them, and then they can tell me how beautiful autism is. Let them watch my son struggle in his special needs classroom every day, let them read the constant notes sent home by the teacher about how difficult and how behind he is, and then they can tell me how beautiful autism is. Let them watch my kid cry because a puppy licked him and it upset and scared him so badly that he can't calm himself down, then they can tell me how beautiful autism is. Let them live my life for the last 5 years, constantly stuck at home with no friend or family support because no one wants to deal with my kid, and then they can tell me how beautiful autism is. Let them explain to my 7-year-old why he is constantly attacked by his older brother and why he can't have friends over to the house or his family at his ball games like the rest of the kids his age, and then they can tell me how beautiful autism is. Until then, quite frankly, they are more than welcome to STFU.
I love my son with all my heart. And because of how much I love him, I hate autism with all my heart and would give anything, and I mean anything up to and including my life, to see my son cured of this hideous disease.
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It could be that i've only slept 4 hours in 2 days or reading comments on other blogs that bash the hell out of someone like Suzanne Wright for speaking her heart, but man my faith in humanity is at a super low, I mean what she said made me cry because I live it everyday. I feel rage when I hear someone with high func autism say they feel offended to be portrayed in that light…….. …… …… I am glad you have a computer and a voice, but my son he has no voice, no way to explain his anger, no way to ask for help, or to even do the basic things so many take for granted….. How could you ever grasp, the feelings a parent has, when I as a parent would give anything, to join him in any world, and just let him know how much I love him and how I am here for him, and to share a joke or a lovely chat. I feel ashamed to tell anyone how hard things really are, and women like Suzanne, they give mothers like me a voice, when we are to tired or too fearful to face the outside world. I wish I had half the courage, maybe one day I will, in the meantime, I devote every moment to my son, as there is really no resting until things get better, and my husband will continue working 70 hours a week so we can survive.
You are soooo right.
I agree Autism Daddy!
I hate ASD period I have yet to find the joy in changing a school age child diaper. I wish I could be honest without being judge. It hurt that not one person look forward to my child company or that the school will place whatever I want in his iep knowing damn well as long as my child don't live with them they could care less
I hurt for you at how alone and justifiably angry you sound here. Please try to find people like yourself in this struggle. Schools suck, and parents have minimal control over IEPs without legal representation. The school schedules an extra hour into my son's IEP meetings, because they know I will not stop until I say everything I think needs said, but I always walk out feeling they did what they knew they were going to do before I walked in. I feel differently about ASD, but I don't know that I would if my experiences had been different.
As a mum of 3 asd kids on different parts of the spectrum I can see all points here! The eldest is epileptic with learning difficulties, he's 14 with a mental age of a much younger child, the middle is high functioning and the youngest is an aspie .
All have similar qualities but also are very different but above all they are my sons and I love them with all my heart and yes its tough some days but I wouldn't change a single thing !!
Really? You wouldn't change the fact that the oldest one suffers from seizures because if that's true you are a really pathetic, uncaring mother. Seizures are horrifying. WTH kind of mother would not want to change the fact their son has epilepsy and learning difficulties? These neurodiverse parents are nauseating.
I have not heard or read Susan Wright's comments, and I cannot appreciate the life of a parent with a severely autistic child. That is not my life, and I have no perspective. I have two teenagers on the high-end of the spectrum, and I understand how they think, because it is how I think… I'd like to address part of the issue from the high-functioning perspective.
HF people come from a perspective of shame. Every awkward, off-topic or inappropriately timed proclamation is treated with scorn by peers and adults. Every melt-down is seen as a tantrum. Self-stimming is being "fidgety". The self-absorption of sensory overload is seen as a lack of empathy, and alternate perspectives is incredibly difficult for many. Avoiding eye-contact is the sign of a liar. Patience, self-control and organization are the virtues admired in a quality human being, but are a struggle for those on the spectrum. Even handwriting is a method to judge the quality of a person, but as the spectrum is often accompanied by fine motor difficulties, AS people are judged poorly. Shame is created in every moment of a HF individual's life. Constant shame and anxiety can be more debilitating than the spectrum disorder itself. In that way, society's perception of autistics can have a massive affect on how they function in society.
The people on the higher end of the spectrum are finally recognizing that they don't need to be ashamed of themselves… and many of them identify very closely with those on the lower end of the spectrum. When you say, "I wish we had that problem", they understand the massive sensory overload that traps a person in their skin. Most HF individuals still have massive sensory overload. When a parent speaks of his or her difficulties, they feel the difficulties of the child are ten times worse… and the parent is focusing on his or her self. To them, the child is in pain, and the parent is shaming them for it.
I agree with Lori Pollard that we will grow as a community. Eight years ago, I walked away from all autism support groups, because the attacks were horrible… Today, the support between families is much better.
My boys were raised to embrace themselves, but to be aware of how they communicate differently and take responsibility for advocating for themselves. Both of them know they are autistic, but it's not a shameful thing. It's just part of what makes them. As everyone walks into this life with a tool bag of skills, the autism is part of their bag. They use those skills to shine and to help them make up the difference in difficult situations. My hope for the future is that all kids will grow up recognizing their struggles and responsibilities without applying the idea of shame to them… that their innate knowledge will help with the development of therapies for the individuals who cannot speak for themselves yet.
I agree with everything you are saying, but I don't want to discount the shame that is placed on high-functioning autistics. I have such severe social anxiety that I rarely leave the house, although I am usually well-received, and I love people… but I am not the same as them. They understand things that I don't. It can feel like everyone is in on a secret that I don't know… There's meaningful eye-contact that I catch is in relationship to something I've said or done, but I don't know what it is. For me to function in any successful permanent position in society, I need someone who understands how I think and understands society to act as an interpreter in order to keep from upsetting people when I say the wrong thing… because even my most well-meant comments and actions come out wrong at times. If you attack the behaviors of autistic people without coming from autism yourself, you are just adding to the feeling that we should be ashamed. I believe this is a reality for a number of people that is largely ignored and directly ties into the anger against Autism Speaks.
I really think everyone has a good point, and everyone has the best of intentions on either "side" of the Suzanne Wright opinion piece "party" 🙂
There definitely needs to be something done in Washington to get help for all of the families. But I think that the way she wrote the call to action went too far, and Autism Speaks has a track record in doing this. Autism is a spectrum, and to those less familiar with the experience, is the take away that ALL autism is as she described? What will that do for the parents who are trying to get their children to be included and allowed to participate – even if it is the most remotely hopeful possibility of being in an included classroom or one day or having some type of job?
Yes, the shock talk seems to work in Washington, but at what cost? She uses the number 1:88 as if all 3 million (her number) people will never talk. Again, you say – if it gets results and $$ from DC, so be it.
I also worry that some parents just noticing the signs of autism in their toddler, will not seek early help because their child and their life don't match the extreme image that Autism Speaks describes. Will they wait and lose valuable time? That's the danger I see.
The people protesting that call to action are hurt by the tone, and the assumption that all families are not living. They are also upset that they do not have a voice at the table. Don't you think it would be helpful to have those high-function autistic folks, who are able to verbalize what they are going through (some of them "severely" affected who communication only through typing) and be able to SHARE that with parents so we can maybe find new ways to reach our kids? That is I think what is missed by the folks who are on the "agree with Suzanne" side.
If everyone were able to work together, without alienating each other, it would have better outcomes for everyone. I don't see where the high-function folks are ever saying they don't appreciate the voice of parents with severely affected kids. I think it's in their good nature, that they actually want to be able to help us.
They need to come to terms and deal with their own autism as they have it, and when they read letters like Suzanne Wright's, and they NEVER get invited to share their experiences in Washington about a condition that they themselves have – I think that is the real source of the frustration. NOT wanting to deny help to the many families traveling a much more challenging journey.
For now, it just seems like the label 'autism' is so big, that it's hard to put it under one big tent, like Autism Speaks purports to do with statements like "This is Autism" and only gives part of the story. That's not fair for someone with such media attention and influence to be allowed to do without expecting a bit of blow back. Best wishes to you all.
I didn't have a problem with Suzanne Wright's post. I get what she was trying to do, and I get that is was geared towards lower-functioning children. My problems with Autism Speaks are reflected though in what the Aspies are saying. They are raising all of this awareness and all of this money, yet they don't listen to any of these families they claim to help, and none of the money they raise goes to help those families either. That's where me be offended with them and their actions comes in.
Suzanne Wright talked about the autism I know and of many other families. I was so relieved and validated as I have a child in need of constant support. As described in a comment above, there has been so much discrimination and biased for children with autism and intellectual disabilities through the media and various organizations and even within the same families in denial of having a chid with autism and ID or with severely autistic. So I am glad that finally that this perphaps gradually is being acknowledged through the media. We talk about a spectrum and we recited i however so many still have to accept the other end of the spectrum and ther various levels of functioning existing.
Yes! You read my mind! She wants dollars for autism. Does it matter what she says to do that. It was for many an over the top description, but for many, things may even be worse than she describes. Leave her alone. She is just trying to get funding for autism. That's it.
I have read all these comments and all I am left with is fear and apprehension. I love and respect my daughter. I am doing everything I know to do for her and I still lay in bed at night and worry. She is considered high functioning and is quite intelligent. But she can't function in a classroom without melting down. She can't go roller skating or handle more social situations. So I stay at home with her and home school and hope for the best…and worry about what happens when I am not here anymore. It's not a matter of respect or love. It's a matter of their not being enough out there for our real kids. Temple is awesome. My daughter is not and never will be Temple.
I thought autism's jabberwocky covered this topic well too. http://autismjabberwocky.blogspot.com/2013/11/missing-point.html?showComment=1384755235744#c7977045044647629111
I thought what she said was beautiful. I see autism a lot differently than most people. My oldest son, who is now 20, was just diagnosed about a year ago. I know, right? Don't get me wrong, he's high functioning. It just took them that long to figure out what was wrong with my kid. I've known since he was 3 weeks old that something wasn't "right". I laid him on the floor, went into the kitchen for a drink, and the little sucker had rolled of at 3 weeks old. By off, I mean 20 feet away. I had doctors tell me "Let him throw his tantrums, he won't hurt himself". Wanna bet? "Introduce new food, he'll eat when he's hungry". Wanna bet? "Vary his routine, it will be good for him". Are you kidding me???? That would set off WW3.
There are doctors out there that are just now figuring out that there is a spectrum involved with autism. Kids like mine slip through the cracks all of the time. Someone needs to get funding going on a national level. My kid would have benefited from some help…hell I could have used the help. As it stands now, I don't think my kid is eligible for help at this point in his life. He doesn't even know he's autistic, and I'm not sure I'll ever tell him.
He works for me. He is responsible for cleaning and stocking the store I manage. I now have the most organized, color coordinated store in the world. The downside is he has discovered that Laffy Taffy has jokes on the outside of the packages. He has memorized them all. The jokes are really bad. Like groaner bad. If I hear one more Laffy Taffy joke, I'm going to scream. The customers love him. They all keep an ear out for really bad jokes and they come tell them to him, so I have a constant really bad joke marathon going on. =)
Awesome post. Loved it. So funny.
Very well said people need to be hit hard to understand in this country seems like the school of hard knocks and hard hits isthe only was to wake them up to some of the realities of anything including autism
Thank you, Thank you, Thank you. I've been thinking about this for the last several days and I'm glad somebody finally said it! BTW, I saw some adults with autism write that they liked the piece by Suzanne Wright. So not everyone with autism was offended.
Thank you! These are exactly my thoughts as I have been reading people bash her. I didn't read what you are referring to but I saw her speech at the opening of the conference and I was moved to tears, for quite some time that day. It was beautiful and she really spoke to me. I am so tired of people with verbal, high functioning children or high functioning people on the spectrum attacking her and the organization. My child needs help and they are fighting to get me that help. I am so glad for the people with autism who can speak and express their disgust for her and Autism Speaks, but my child doesn't have that ability and these people are fighting against him receiving that help. It's infuriating! They are barriers to my child being able to have a voice of his own one day.
Here's MY bottom line on Autism Speaks. They campaigned BIG TIME for insurance coverage of autism here in California, and got it. Without a big name, celebrity-endorsed, big money organization the fight would not have gotten as far as it did, and my little guy (non-verbal, low functioning) would not be getting the five-days a week therapy he is now getting. We've also been involved in various research studies that AS has funded. So you know what? I'll keep walking for 'em, thanks. I don't understand the AS bashers. The last thing we need is to show a divided front. And I'm so thankful that there are other parents who would immediately be rid of the autism if at all possible.
Well said! I have a son high functioning, but low IQ. He is able to talk and for that I'm grateful. But for kids who cant speak it breaks my heart and yes they need more therapy. We must stand together for the sake of our children. I will fight,walk and do what ever I can to help not only my child, but for every child with Autism low or high.
Like I said I have one of each…they were both pacing today in different rooms at the same time. Weeeee! Autism Speaks does a good job. They gave to help find Avonte. They have good intentions. They arent perfect (sure we all know about that) but they are trying to help a growing population that many want to ignore. Hey AD please start a Autism Community where we all take care of each others kids and no one has to be 'put away' Im in!
As the mother of an Aspie/high functioning child I couldn't agree more! Call me cold but if I could take my son's autism away I would in a heartbeat. Yes he is awesome and amazing, but he is awesome and amazing because he is Liam not because he is Autism. To have your child punch themselves in the head and say they want to die at 6 years old and not want to take that away is something I will never understand. So this whole high functioning vs low functioning this I think is bs. I believe my son would be just as amazing and awesome without autism because he is awesome and amazing. The autism part can hit the road as far as I'm concerned!
I would like to offer my blog up for more guest postings on this topic. My daughter is a behavioral therapist for children with Autism. (ABA) Run your posts by me and I will work with you on a case by case basis. I have gained a little traffic attention and hope to help your cause. Check out my blog http://itsnotthedestination.blogspot.com
I agree w those who are confused by the reaction her words created. I was also jealous of the comment about what if the woman's child read that one day… My daughter is 5 and I try to still have hope of her being self reliant someday, but I also have the realistic fear I will be changing my daughter's pull ups when she's a young adult. The posters saying they're proud of their ASD are so lucky that they have the comprehension and ability to express that thought… I understand their being proud of their uniqueness but they need to realize they have it lucky… I'm actually quite shocked at the responses she got… ASD people should be more accepting of the fact they're all different from each other… Yet it's almost as if they higher functioning ASD population wants to deny the fact that a lot of families are dealing w severe symptoms and that some days it's even scarier and more distressing than her post portrayed! This is something that needs to be addressed and I am happy she expressed some the exact thoughts I have had! I also applaud you AD, I read a few different autism blogs and your words always ring the most true to me and how I view things as well.
It doesn't matter if you can speak or not, if they can write a blog, then they are high functioning. Sheesh!
There's plenty of blogs out there written by non speaking autistics, and they are not happy with Suzanne wright either. You just have to look for them. It's not just the high functioning people who have expressed disgust for her platform.
As a parent of a child with what is formerly known as Pdd-Nos (now called HFA), I can promise you that even though he is "high functioning" he most certainly would take away some of his challenges if given the chance. I cant even count how many times he's asked me how come school is so much harder for him and he wishes it wasnt. Or that he wishes he could use the bathroom for both needs at school but he doesnt want to draw attention to himself by bringing wipes and instead waits until he gets home. Or that he wishes he could play sports better but always seems to get left behind on teams due to lack of coordination and not being able to learn at the same pace. I can go on and on. He loves himself, we love him, but given the option I'm pretty positive he would change some things.
Thanks for validating my feelings when I read about this. I couldn't understand why people were vilifying her. It's reality for many people, including my family.
I agree 100% AD! I am envious of anyone who doesn't relate to her words. I am grateful for the attention that the Wrights have brought to autism. And yes, it's cases like yours and mine that must be showcased to garner funding. Do you think Congress is gonna' fund people like the man with Asperger's who competed in The Amazing Race?
I totally agree and thank you for posting and putting it out there. when I read her piece it totally resonated with me..literally. And then to read those harsh comments seriously confused me? If we don;t want to cure Autism, why to we do therapies and spend hours on ABA and getting the best school services and making sure everyone is aware and included? If we just want to accept autism and be done then why try and advocate? If one day my child loses his diagnosis, I will be happy..if not I will also be happy, but it doesn't mean we don;t try for better for our kids..all our kids.
It's about dehumanizing them. It's about deionizing autism. It's about their respect and dignity as a human being, no matter how high or low functioning. They are breeding fear and misunderstanding, and I can't stand with that. There's lots of autistic bloggers out there who are considered severe and non verbal. Yet they can type. After years and years of painful practice, they can make their voices hears. And they aren't happy either. The point is that no matter what level of functioning our children deserve to be treated like human beings, and all her post did was demoralize, dehumanized and disrespect our kids. I see your point of view AD, but I can't agree with you not is one. And my daughter is not high functioning. She's not severe either. She is considered moderate. We have plenty df stuggles and most of her speech is not functional, but I still love and respect her as a human being with thoughts and feelings. She's not a burden to me, she never has been, and she never will be.
As I read this page my son screams and tugs at me doing All he can to convince me he Needs candy an hour before bedtime!! The lady that wrote the article spoke on true issues that desperately need to be addressed. Any one that criticizes her is Welcome to come and spend a week with me and see what life is like when one of your children has Classic Autism. Thank you for sharing.
Of course! Like I said, we need to stick together!
Totally agree with you and am planning a blog piece on this–I'm even further behind the power curve than you 🙂 We also have a child on the low end of the spectrum and remember a time when he didn't have autism–so I get the "missing" analogy. I don't consider autism a gift–my son is smart, but he isn't potty trained, is non-verbal, has severe gut issues, shakes uncontrollably at times and is allergic to just about every food there is. I don't consider his autism is form of neurodiversity, but rather a serious health problem.
I have a 23 year old Aspie son, so high functioning he falls through the cracks and doesn't get the services he needs. He's floundering. I also have a 20 year old son profoundly ASD, with the accompanying anxiety, violence, wandering, non-verbal and more. He was diagnosed before my eldest, and when he was I still met doctors who believed Autism was caused by a mother not loving her child enough. I was in many of the fights that brought about services here in Ontario that children with ASD- ALL forms and levels- benefit from now. And the only way we got anyone to listen to us was to put a REAL face on autism, and accurately portray it's biggest challenges. Because you will never have adequate funding. Ever. That's just how it is. So if you present a best case scenario you are short changing everyone. Not to be harsh, but would SF have moved heaven and earth to make the wish come true of a child who had to have a mole removed? No. Did all kids AND adults watching get a thrill out of seeing batman? Yes.Will adequate services ever be available for ALL asd families? Probably not. But if you fight for those with greatest need then those with lesser or different challenges will benefit as well. I am thrilled Autism finally is a word the general public knows. When my boys were small no one did. This change is huge. And as with everything else, with awareness comes criticism- even from within, before finally there is acceptance. Twenty years ago, I longed for the day when I could say "autistic" and not have someone say, in all sincerity "you mean artistic?" Twenty years ago I longed for groups where I could meet other ASD families and not feel so alone. That day is here.10 years from now all this in-fighting will be a distant memory, and families of the newly diagnosed will be given accurate info, treatment (whether Aba, job help, anything needed at any end of the spectrum), and have no clue why one autism family would attack another. These are growing pains we are going through as a population. And as growing pains, they are, well, painful. But they will soon be over. And I can't wait for that day. In the meantime, I too blog about it, daysofwhineandrose.blogspot.ca because I need the outlet. If I don't I will collapse. As so many in our situation do. So,please, in the meantime, let's not be the reason another ASD mom, dad, sib or individual collapses. Let's not attack each other. Autism Daddy, as usual, your post was dead on! Thank you!
Thank you both. As I have said before know is not the time to be divided. We must work together for the sake of our children low or high. Both your blogs help and for that I'm thankful.
Autism Daddy, we can collaborate on a piece anytime. Contact me thru google+ (Lori Pollard JazzBrat) or the blogs- daysofwhineandrose.blogspot.ca or jazzbrat.blogspot.ca. We have an interesting situation in that i'm in Canada and you're in the States, and we have similar situations, but different enough for alternate views. And both on blogger so makes it easy! Contact me anytime to brainstorm
You can raid my blog posts as well, pics too. Just let me know lol! Most are already on The Ark but there are others in the blog, and of course more written material, fb posts are too short lol!
Lori, I love your take on it! I'd love to possibly use this response from you in a future blog post or FB post. Do I have your permission?
I totally agree also. And I do have a high functioning 19 year old who can read. All she is doing is trying to HELP. How can people be so cruel?
I think both sides of the argument need to remember that, if you meet someone on the spectrum, you've met only one person with Autism. Higher functioning/Aspie groups need to remember that there are many parents dealing with children who have a much more varying and often severe symptoms associated with their child's Autism. They are also being encouraged by specialist who focus parents on the importance of early intervention. Naturally, parents are desperate to do whatever it takes to make their children's' life better. Conversely, adults living and attempting to function within the parameters of their Autism symptoms resent the efforts of parents, experts and society to "fix" or "cure" autism, having developed an appreciation for certain aspects of their Autism that they feel are beneficial, even gifts. No one is wrong, necessarily. There are just so many opinions about what is needed, how to prioritize, where to focus funding, when to implement transition, etc., etc., etc. In reality, there are likely more opinions about what decisions need to be made regarding people with ASD, than there are actually people with ASD. I think they all need a voice, and whether it takes someone else speaking on their behalf, everyone should be "heard". Bottom line, I appreciate Suzanne's passion, and Autism Dad's transparency. They are two voices in a choir made up of those impacted WITH and BY ASD, and we all need to learn how to harmonize, not drown each other out.
Frankly, I was a bit offended by the comments which totally marginalized those of us with family members with profound autism. My child (18 now) is non-verbal and profoundly affected. He also has seizures. Barney and Kermit are his best friends and he is not writing or reading blogs. He is a very valuable person to us, but autism is not a celebration for us any more than Alzheimers or Multiple Sclerosis are celebrations to those who deal with them. I am happy for those who are so mildly affected that they can advocate and comment on blogs, but they aren't representative of our situation in the least. I certainly don't want to change them if they are satisfied with their functioning, but I worry about my child's future with very good reason. As another blogger stated, they seem almost indignant that autism could ever include intellectual disability and frankly, they are showing bias towards those who do have intellectual disability. I know I sound worked up, but I don't think Ms. Wright deserved that response.
I completely agree with you. The only way to get the government's attention is to show them the harshest side of autism. Sure not all people with autism are the same, but that's why it's called a SPECTRUM disorder. My son is somewhat high-functioning, but while reading her blog I wasn't offended in the slightest. I think that you are right; she wasn't trying to relate to the parents, she was trying to get the attention of the big guns in charge of insurance reform. Good for her, she is doing more than most of us parents as far as changing things on a national level.
Right on, AD. I think you are the only blog that I've read that is somewhat supportive of what she said. People need to look at her comments with logic and not emotion.
I agree with you. I don't like AS in general as I believe there are better groups out there but you have a point. There are more Alex & Dorothy's out there than Temple & Eustacia's. Kwim? When people hear of Autism that's who they think of now. And it's not realistic to my family at least. If we painted rosie pics of life with Autism nobody would help. It would be chalked up to something that is very livable. And sometimes it's not, not at all.
Statistically, there is already a majority adult autism population….according to Autism Speaks recently released study, that is. Theu claim only 17% of the survey respondents were 17 & under.
I totally agree. Perfectly said. If people talk about how "great" autism is we would not get any funding.