I’m traveling and haven’t had time to blog. But a couple of comments came in on the last post about How We Discuss Our Children that made me think a bit more about all of this.
When my daughter was first diagnosed we were told a great many things that frightened us as well as some things that were very encouraging, but when those, seemingly “good” things did not come to pass, we became even more frightened. In part because it became clear no one actually knew what they were talking about and coupled with that realization was the idea that if they didn’t know what they were talking about, how were we going to help our child? Add to that our expectations, no one talked with us about any “positive” aspects of the diagnosis, nor did anyone suggest anything that sounded remotely “good”. All of this was done with good intentions, lots of well-meaning advice, but all of it came from non autistic people who were operating under the assumption that our neurology was the gold standard and one that everyone should aspire to, as if that were possible.
Autism was framed in the “disease” model with people alluding to cancer as an appropriate analogy. As I have family who have both died and survived cancer, and have witnessed what chemotherapy does to a person, both when it works and does not, this was particularly awful as I took it literally and began to see any and all “treatments” as a kind of “chemotherapy”. I even consoled myself with the idea that this “risky” treatment would all be worth it, if it “saved my child’s life”. I spoke of it in this way and thought of autism as “life threatening” because I could not imagine a life without language, friendships, empathy, etc and this was what we were being told autism was. This is an incredibly dangerous idea for any of us to engage in and is why I find it incredibly unethical for organizations and public figures to talk about autism and Autistic people in this way.
Now add to this the financial toll of all those unverified “treatments”, the appointments, dealing with schools and the general anxieties that come with parenting on too little sleep and too much caffeine, along with a parent who has expectations that something she does will “save her child’s life”, and that’s a pretty great recipe for discontent, depression, anxiety and upset. Particularly when it becomes increasingly clear that there is little available that will actually prove helpful to our kids.
Think of how different it would be if our pediatrician was a non-speaking Autistic person and our non autistic older child had a couple of Autistic teachers and another kid’s parent was Autistic and one of our closest friends happened to be Autistic and Autistic kids were not segregated out of schools and work places accommodated their neurology and made it easier for Autistic people to be among us. Part of that initial fear we parents often have is because we have never met anyone who is Autistic. All the information we then receive is taken as fact and not questioned immediately.
So yeah, there are things that really do need to be addressed and changed because the stress of parenting is massively exacerbated by society’s use of the medical model and because of the way we have segregated those who are Autistic. It isn’t that a child who has all kinds of medical issues and co-occurring diagnoses will not be cause for concern, it is that to add to these concerns the – oh-and-by-the-way, autism-is-an-epidemic-that-is-analogous-to-cancer-try-anything-and-everything-to-erradicate-it, is increasing everyone’s pain and suffering, including our children’s.
Emma's Hope Book 
“In part because it became clear no one actually knew what they were talking about and coupled with that realization was the idea that if they didn’t know what they were talking about, how were we going to help our child?” Yes, that happened to us. Also, I think they were afraid to tell me that they thought my child had challenges bigger than I realized and it would be a very slow slog. They were afraid of how I would react. It would have been helpful if they would have said, “Even though she has a lot of words coming out, getting those words out in a way that she can request what she needs and express what she means may take a very long time. That is why we need to work on other ways to communicate.” Probably because they were not confident enough to say it, but still, I see the signs now in retrospect that they thought that all along.
There have always been plenty of autitistic adults around for people to meet. We have written books, blog (some blog daily), and generally are out and about on social media and in this world. We are not seen by the majority in the autism community as knowing anything at all about autism or about living our own autistic lives. Parents of autistic children are generally seen as the experts about autism and about us.
I am not writing my comment for you, Ariane, but for those who may read your blog and think the only autistic adult in the world is Temple Grandin. Thanks for all you continue to do to chip away at ingrained attitudes and ways of thinking when it comes to autistics. Love you so much!
The autistic community is still a very small subsection of the world at large, though. It might seem highly visible, with all the blogging and books and Twitter and Facebook, but it’s not. I’m nearly 37 and I met my first officially diagnosed autistic person 6 weeks ago. The first time I read words written by an officially diagnosed autistic person was 5 months ago. The first time I heard about Temple Grandin was about 3-4 months ago. So she’s not that visible either. This is the complete lack of information that parents of a newly diagnosed child get confronted with. And that’s where those dangerous preconceptions take hold.
Yes Judy…thanks for posting that. Best thing I ever did was to start reading books written by people with autism. BTW…I wish you or other people with autism would hop on over to the autism discussion page and weigh in on the “empathy issue” he has been posting about. He has a huge following and I usually think his stuff is balanced, but that part really got to me. I feel like it is not correct to say you guys just don’t get empathy. That is not what I have read from you and from others.
@grahamta when you say “the autism discussion page” what do you mean? and who do you mean by “he”? I am very interested in what gets said re empathy and autism – I’ve writte a bit about it in the latest issue of Aspergers United (Google it?). As Damian Milton has summed it up, there tends to be a “double empathy” thing, a mutual lack of understanding (“)
He is a person who is trying to help others…both a behaviorist and RDI consultant. I hope that you can post the other view point. https://www.facebook.com/autismdiscussionpage?fref=ts
I wanted to write about this cancer vs. autism thing, but you beat me to it! The thing that triggered me was a request from a cancer awareness activist who asked me to blog about a video that would “spread a message of hope” to cancer victims. And I was like… erm, no. Not on an autistic blog. Bad association. Not going to go there. Autism doesn’t kill us. Autism is not a disease we need to fight. It’s a part of who we are. It can be challenging and yes it can cause discomfort or suffering sometimes, but that’s not what makes something a disease. Being a woman can cause discomfort and suffering too (childbirth anyone?). And yet I am not expected to treat my womanhood as something other than intrinsically a part of me, even by the people who think women are second class citizens.
I also have thought about this more than once, the likening, openly or understood with an illness like cancer. I have lost someone to cancer, but I have found a parallel of sorts, too: in terms of to what length (of effort, money, and cruelty at times) parents will go to submit their kids to completely barbaric “treatments” or “cures”. I remember court cases in the 80s where cancer patients with no more hope from the medicine would turn to these sort of procedures. I don’t understand either.
“Part of that initial fear we parents often have is because we have never met anyone who is Autistic.”
I would say most people just don’t realize they have met Autistic people and have them in their family – they don’t realize how wide the spectrum is and how that person who is a little loud or socially awkward or won’t stop talking is actually Autistic. That neighbour you have who’s “a nice person, but a little weird and seems to stay up all night watching TV” could very well be Autistic. Parents need to remember that their children will grow up and won’t always express themselves the way they do now. Eventually they will blend in for the most part, possibly with quirky fashion sense and a penchant for walking every where really quickly 🙂
So true, autism is not a disease. True it’s part of who you are, if you are autistic, just like being deaf is part of who you are if you are deaf. I am familiar with the Deaf World. I can use ASL and I know that there is a lot of deaf pride out there. Deaf folks who use sign language are proud of it and their culture. It is interesting that if parents want to have their child get a cochlear implant to help their child begin to hear, many people in the Deaf world are opposed to it. They think the child should be left alone. His deafness is part of who he is and why would you want to change that? This thinking about not trying to find a “cure” for autism is kind of the same thing. The cochlear implant is not always successful. It requires surgery and discomfort for the child, so why try it? If you do try it you will learn something about deafness and you, your child, and some other children in the future will learn from your experience. More importantly, it might help your child to hear. How can you not try it, if you think hearing is desirable? With autism, if I don’t try something that could really help, then I believe, I am cheating my daughter. We have tried lots of different things, and all of them have been somewhat helpful, even though they didn’t fundamentally change the autism. The things we’ve tried have helped us get a better understanding of our daughter, and they have eased her symptoms. A thing that has been quite helpful is the Specific Carb Diet. It is hard to stick to but it gets rid of chronic diarrhea, and tummy problems. For us it worked in about five days. We learned that self abuse is often caused by actual physical pain, like tummy aches, head aches, and menstrual cramps. Our daughter didn’t tell us this. We figured it out by paying attention and it helped us accommodate her autism in a better way.
That sounds a lot like FODMAP: http://en.wikipedia.org/wiki/FODMAP
Over time, I have naturally gravitated to this diet. I thought I had a whole bunch of sensitivities until I found this and found out there’s a name for the giant list of things I have trouble digesting. It’s not hard to stick to because I already know what I can and cannot eat. If you let an Autistic person choose their diet (offer lots of options and let them pick) they will naturally eat only what they know they can digest. Or at least that’s what I believe. I offer my son lots of things to try and he picks what he wants that day. It’s not the most varied diet, but he’s only 4 and I figure, like me, he will branch out eventually. And maybe he will end up being a FODMAP person like me and maybe not.
“If you let an Autistic person choose their diet (offer lots of options and let them pick) they will naturally eat only what they know they can digest.”
That’s not necessarily true–I’m lactose intolerant and didn’t figure it out until I was in my 20’s. I had just always had such stomach problems that I had no way to connect it to one specific thing I was eating.
Both autistic and non-autistic people routinely don’t get it figured out that they have celiac disease until well into adulthood.
Autistic kids shouldn’t have their diets restricted unnecessarily, without compelling evidence that they have allergies or food sensitivities, and of course shouldn’t be compelled to eat things they can’t stand eating…and while our pattern-recognition may be better than most people’s, that doesn’t mean we have some magic wisdom about what’s going on with our gut bacteria.
Well, admittedly, I had the help of a naturopath who helped me make associations in my early 20s. But I was 10 when I figured out I was lactose intolerant. My mom was still trying to force me to drink milk, so I did some research and showed her what my problem was. (Because, you know, just being sick wasn’t enough evidence for her). Anywho, I was diagnosed with IBS in my early 20s and then I saw a naturopath who showed me what I was eating was probably giving me issues. When I changed my diet, all my stomach issues disappeared.
As for my son, I don’t limit him – I offer lots of choices, including things I know upset my own stomach – and let him choose. I’ve noticed he naturally gravitates towards things that don’t give him diarrhea. I think he (and most children) are able to make those kinds of connections. Just like most children naturally avoid or do not like foods they are allergic to. It’s not magic, it’s just nature protecting itself. And it depends on how well you are able to listen to your body. If you don’t force children to ignore their sensations, or force them to eat things they really don’t like, they’re more likely to listen to their bodies.
If it takes a specific diet to get a parent to make the connection between diet and diarrhea and finally listen to their child, so be it. It sure beats the alternative of the kid living with cramps and diarrhea all the time.
And besides the dangerous, painful, ineffective, expensive, unproven treatments, and the added stress on the whole family, and the unfairness of holding a parent responsible for figuring out what magic treatment will make a child not autistic when the entire scientific and medical world has not been able to do that…it’s really dangerous to a child in the long run to teach them that the only way they will ever have an acceptable life is to be constantly at war with themselves.
And since autism is not curable, because it is intrinsic to our neurology, that war will be constant, and lifelong. There’s no winning a war against your own wholeness and authenticity.
I, too, have friends and family who have both survived and not survived cancer. And autism is NOTHING like cancer.
You are very right about that harm I say this from my experience with self harm starting at age 9 because I didn’t feel like anyone excepted me. I have Aspergers
You make an important point about the harm that can be caused by regarding autism as a disease, and also the lack of visibility of autistic people outside environments like this online community (I have never knowingly met another autistic person in real life in my 40+ years).
Without seeing the reality of life with autism, what else can a parent do but rely on what they are told by the medical profession where there is a strong inclination to pathologize every condition, regard everything as a disease that requires intervention to “cure”.
Autism is not a disease, there is no cure. But through understanding it is possible to accommodate the inherent differences and achieve a decent quality of life.
I think it depends a lot on your outlook on life and the plans you had (or not) how you will deal with the announcement of autism in your life through some more or less informed, more or less sensitive, more or less helpful professional. as a parent, i had already gone through a lot of stuff before my child was even born and then some more, that was unrelated to him. I think those other life changing and unsettling experiences and a certain stoicism have helped me not to feel the ‘panic’ some parents describe, or ‘grief’, at least not that much. it was certainly not the professional that confirmed the diagnosis officially that helped me efficiently (he just offered pills, just posted the comic..) but rather my own attitude of looking into lots of different opinions and approaches to find a few ways that would really, immediately help my son. The first book I read was written by an autistic and I searched forums first then found blogs of autistics. I am still taking things step by step and don’t look too far in the future.
But it’s true, we are all different and every bad reaction or bad communication about autism from the outside can impress strongly on a parent in the confusion of the time just after the diagnosis. And the people with agendas, with frauds, with quackery, who are in it for the money and for nothing else, they prey on these vulnerable parents…and on the kids 😦
The comparison of autism and cancer is one that has truly bothered me. Before my husband and I had a child, he had cancer. It was a rare one mainly seen in children so he was treated by a pediatric oncologist. For more than six months just after we were married, we went together to that ward and sat with the parents of truly sick children, and we played with them and laughed with them and cried with them. To see babies and toddlers undergoing chemo, knowing as an adult the pain and weakness it causes, was one of the hardest times of our lives. There was fear, sadness, and courage in those parents. When we learned our daughter was autistic, we thankfully didn’t listen to the doomsayers, which largely included the professionals. And I have fought that analogy of autism and cancer because I know for so many families on the oncology ward, autism wouldn’t be anything but a way that we would need to adjust and accommodate and help our children. Our children are not ill, they are not dying. Be grateful, parents. I would never compare my daughter to a child with cancer, and I would never ever dare compare my inconveniences with the reality of a parent whose child has cancer.
Well said!
Great post! My mom died of cancer a couple of months before I was married – after a super long battle including surgery, chemo, radiation, a bone marrow transplant, alternative therapies, and a hail mary trip to the Dominican Republic for oxygen therapy. She never got to meet my 3 kids, who, in turn, have had a total of 18 surgeries (to date) – bone, tissue, eye, teeth, brain, and a rebellious appendix – and we have been in hospitals a LOT. My youngest has PDD-NOS, and is funny as hell. Whenever I had thought of cancer + autism in the past, it has been in terms of the importance of early detection and quality interventions (therapies, diet, exercise…), and for me, the analogy stops there. It actually never occured to me that autism could be viewed as a disease, much less as a deadly disease- perhaps because of my own intense experiences with both. Thank you for making me think today! 🙂
When my daughter was in her teens, I sought out autistic people. They weren’t hard to find. Some of their insight was very good, but some of it wasn’t, mainly because they hadn’t been parents themselves. But what started off as an effort to learn more to help her, became an epiphany for myself, because I discovered that I was on the Spectrum. I’d spent my life trying to disregard or hide the things that didn’t fit with the world and it was taking a major toll on my health. I began learning about autism from a new perspective. These days I’m doing better, my daughter’s in college now, we have a close relationship. Coming out as autistic came with a cost though, I lost a lot of credibility among other parents as an advocate. People began to treat me differently.
There’s quite a few of us autistics who are parents of autistics, out there. I think that attitudes toward adult autistics need to change in the autism community. You all need to make room for us at the table!! But I think that the responsibility for bridge-building does not lie entirely on the parent community. I think some autistic advocates are so strident in their advocacy, that it has resulted in many parents not wanting to listen to what any autistic person has to say. Both sides are going to have to actively learn how to work together for the betterment of all.
Thank you! I was beginning to think that no one out there heard me at all. My impression is that because I am a parent of a severely autistic 40 year old daughter, who still needs my support and help, all of my opinions are suspect and I must be careless of her feelings and abusive because she still hasn’t shown how amazingly intelligent she is. I treat her as much as possible, with the assumption that she does understand a lot more than she can express. I know a lot of the autistic adults out there probably think their parents were insensitive or just plain ignorant in the way they approached life with autism. A lot of Neuro-typical adults feel the same way.
It has something to do with being a new generation and thinking you are going to change the world. Truly I hope you do. I love reading stuff by autistic adults. It gives me and my daughter a lot of hope.
Autism is nothing like cancer. Cancer is much more black and white. You are diagnosed with it, treated for it, and you either survive or you don’t. As we all know, autism is not so black and white, but rather so many shades of gray that you can’t count them all. Add that to all we don’t know, and yeah – the comparison stinks.
I have to disagree (respectfully, of course) about the life threatening aspect of autism, though, at least in my child’s case. Since she has Rett’s (the most severe form of autism on the spectrum) she has a whole host of other issues that could play out someday – from seizures, to heart problems, and scoliosis. This in addition to being non-verbal and not a dependable communicator on any device. Add that to her tendency to get staph infections, etc – I’m scared for my daughter’s life every single day. I fully expect one day she will have an injury or illness that will go unnoticed. My child could day of a bladder infection because she can’t tell me it burns when she pees!
For those on the other end of the autism spectrum, there is the communication issues, as well. But I feel their bigger threat is from the bigotry, ignorance, and violence in the world. Not just the danger that can come from caregivers, though that is the big one. The danger of no one taking them seriously. The danger of being dismissed. The danger of suicide from bullying. The list goes on and on.
No, autism will not kill you like cancer. But I feel it’s life threatening, nonetheless.
Yep. 🙂
Actually, you may have known lots of autistic people but they may have been passing as NT, as that’s often the safer choice. It would be great if one didn’t have to pass to be safe. 🙂
I agree I know for me trying to hide my Aspergers just made me severely depressed, you can’t run from who you are!
Love the post. Chemotherapy, well it is only taken as therapy because it is a lesser evil and in cancer it is the matter of life and death of course. Was the autism therapy compared to chemotherapy taken as a lesser evil? It’s all so unbelievable. My son was diagnosed four years ago. I didn’t know what to think and couldn’t believe that he was autistic because he didn’t fit the picture. It took me a while to realise that it was not that my boy didn’t fit the picture but that autism didn’t fit the picture the way it was portrayed.
Every person with autism is pretty much different from every other person with autism. It’s kind of like snowflakes 🙂
‘Autism is worse than cancer’ is a form of ‘legitimizing myth’. It has as a goal the ultimate elimination – either by ‘cure’ or death – of all autistic individuals, this being so regardless of their apparent functioning.
The reason for this is simple: autists do not do ‘magic(k), and Normalistic instinct places all meaningful behavior in the ‘magical’ domain. Example: the concept of ‘dressing for success’ – a species of manipulation formally called ‘impression management’ – is believed to work (by the subconscious ) as if one becomes a TOTALLY different person or being by a simple change of outward appearance.
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Hi Denis,
It’s not that complicated. Employers think that if you look clean and neat for work, it makes their company look clean and neat as well. It’s your choice if you want to do that or not. My son has cerebral palsy. He applied for a job at a restaurant. The manager asked him if he would be willing to cut his hair which is fairly long. My son said how much is the pay? Since it was less than $10/hour he refused. Probably he would have cut his hair if he got $20/hour. How you respond to other people’s expectations is your choice. No one is perfect and we are all flies in the ointment sometimes.
continued due to software glitch
(cue shaman’s drum)
This is exactly what shamans /houngans/mambos/medicine men ‘do’ when they don masks – they become another being ( in the spirit realm) – a being which, in that location, has more POWER than a mere human.
Another way of saying this is “one becomes a species of ‘god’.
Finally, the idea of ‘magic(k) insist that ‘power can only be present in perfection’ – perfect on of form, and perfection in all other ways; and most of all, perfection both individual and collective.
We ARE the ‘fly’ in that ointment – and hence our ‘removal’ is mandatory according to the magical thinking that permeates the Normalistic world.
You’re right Autism is not like cancer my life’s goal is to show that different is not less.
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