When Emma was diagnosed as Autistic, we read that autism was an “epidemic”. I remember the figures – 1 in 166. In 1980 the rate was 1 in 10,000 according to others it was more like 1 in 2,500. Andrew Wakefield had published his “study” of 12 subjects in The Lancet, regarding his belief that vaccines were linked to autism, six years before. The Lancet’s retraction of the Wakefield study did not occur until 2010, and the fallout was, at the time of Emma’s diagnosis, being widely felt. What I didn’t know, until much later, was that Wakefield had applied for a patent just nine months prior to the publication of his, now discredited, study for a new MMR vaccine that he said was safer. Wakefield, it seems, stood to make an enormous amount of money. Yet I and many parents like me wondered if there was truth to Wakefield’s “findings”. Despite subsequent studies showing that his findings were false, people wondered. After all, autism was an “epidemic” so what was causing the epidemic? It seemed vaccines provided an answer.
Except, what if there was no epidemic? What if the word epidemic was being used by organizations intent on raising money? These were the questions I began to ask. If autism WASN’T an epidemic, then where were all those Autistic children when I was a kid? And where were they now? Why didn’t I know dozens and dozens of Autistic people? They should be everywhere I concluded and since I didn’t know of any personally, I decided to look for them. So began my search for Autistic people. (I know my wording sounds archaic, but I actually meant for it to, because it illustrates my thinking not so long ago.) I periodically googled phrases like – “where are all the autistic adults?” or “Autistic adults” or “Autistic adults in the work place” or anything else I could think of that might lead me to them. I found very few. I came upon Temple Grandin and Donna Williams, whose books I immediately read, there were a handful of others, but the shelves of the “Special Needs” section of the bookstores I frequented were filled with increasing numbers of memoirs written by parents, not Autistic people. When more and more people began blogging, I started googling “Autistic blogs” and came up with not a one. For years I would periodically look and when my searches came up empty, I concluded – It must be an epidemic. It seemed a logical conclusion. And eventually having concluded that autism was in fact an “epidemic” I stopped looking for Autistic adults.
Then two things happened within a six-week period. A follower of this blog sent me a link to Julia Bascom’s blog – Just Stimming and another parent encouraged me to read the anthropologist and father of an Autistic child, Roy Richard Grinker’s Unstrange Minds: Remapping the World of Autism who suggests autism is not an epidemic and the current rates are a more accurate reading of what has always existed. It was a one-two punch; I began to question everything I thought I knew. From Julia’s blog I began reading and reaching out to Autistic bloggers. Through my, at first tentative, communications I began to find many, many more. It was literally like discovering an alternate reality, and as mind-blowing as anything I’ve ever experienced. The more I looked, the more I found. Within eight months I went from not personally knowing any Autistic adults to knowing hundreds of people who are my age and older.
One friend of mine and I were discussing all of this the other day. He pointed out that many people, like him were beaten, often brutally by their parents to make them stop their undesirable behaviors that might make them “stick out” or in any way noticeable. He said, “People like me would hide our Autistic traits as best we could. We were still considered the weird kids and the outcasts, but we were not called Autistic.” He reminded me that he and others like him were trying their best to remain as “inconspicuous as possible because the only signs we had were the “Kick Me” signs that would be put on us by bullies.” He then went on to say, “We had to do our best to be invisible and/or find a way to blend in or hide to stop the beatings by family and class-mates.”
As I think about all of this, I have more questions. What about the autistic girls who were like my daughter? Would my daughter, had she been born in the 50’s, have learned to “pass”? And if so, what does that say about our school system, because Emma is in no way near grade level? Would she have been deemed learning disabled, but taught how to “behave appropriately”? Would she have, through punishment, been able to conform? What about her language? Would she have just been thought a “quiet” child? The little girl who, if she’d been punished enough, learned to sit silently in the corner? At what cost would this have occurred? Or would we have been told to institutionalize her for the “good of the family”? Would we have been advised to save our son and ourselves from being “dragged down”? Has our thinking changed so much?
I ask these questions honestly. It took me a very long time to find all those Autistic adults I’d been looking for since my daughter was diagnosed in 2004. When I was still looking, I never, not for a second, thought in finding, I would also find hope. It never occurred to me that I would form relationships that are, not only important to me, but relationships I cannot imagine being without. Friendships that are vitally important to me, people I love and look forward to seeing and spending time with. People who would patiently explain to me what it was like growing up in an era that did not “recognize” autism. People who try to help me understand what it is like living in a society that does not want to see or hear them. People who do not enjoy the basic rights I enjoy and do not even think about. People who are condemned, abused and misunderstood. And yet, that is exactly what happened.
- At What Point Do Our Actions Constitute Torture? (emmashopebook.com)
- Want to Know About Autism? Ask An Autistic (emmashopebook.com)
- Autism = A Human Rights Issue (emmashopebook.com)
- Andrew Wakefield tops the “Retraction Epidemic” (leftbrainrightbrain.co.uk)
- Not Quite Everything Parents Need to Know About Autism Spectrum Disorders (lizditz.typepad.com)
When I was young, there were Things One Did Not Do. You gave a non specific neurological diagnosis so a child’s medical records wouldn’t say autism or epilepsy. Stigma was massive. When at 2yo, the daycare suggested there were issues, my parents angrily removed me from school. At 3yo, they removed me from a couple more daycares for the same reason. Then again, as a 4yo in preschool and a 5yo in kindergarten. Stigma was a barrier even when symptoms were too obvious to ignore. My mother yanked me out of a public place in reaction to the remark of some stranger so many times, my arm hurts just thinking about it. We’ve always been around. Hidden.
I’m just glad we found each other. I can’t really take full credit for having found you, as much as I’d like to, because I think it was through twitter and a mutual tweeter at that. But still. I’m very glad I know you!
I agree with whoever said that the current rates most likely reflect what they were “back then”. Thing is, back then Aspergers didn’t “exist” (or wasn’t officially recognized). The history of autism actually extends pretty far back.
Autistic was only the severe end, often classed under schizophrenic. That was in the 1900s. Autistic was basically the schizophrenics who were self absorbed. It took 40+ years until Kanner noticed that there were children who displayed traits such as impairments in social interaction, anguish for changes, good memory, belated echolalia, over sensitivity to certain stimuli (especially sound), etc. He called them ‘Autistic’. A year later Hans Aspergers had his own study going on, and he named these same symptomatic kids as ‘Autistic psycopaths’. Except instead of the echolalia, he noticed that they spoke like “little professors” instead. But his work wasn’t well known or recognized until the 1980s. In the early 1990s, ’94 I believe, it was added to the DSM. Of course the rates will “skyrocket”, a new diagnosis was added with broader criteria.
I think as time goes on, we’re realizing the differences between autism and, say, schizophrenia, schizotypal, etc. The rates will climb until they plateau eventually. The ‘Baby boom’ generation probably had their fair share of autistic individuals as well, but they weren’t given access to the information until it became more widely known. More people are also being correctly diagnosed now, compared to a lot of misdiagnoses as a kid.
I went on a bit of a tangent, but hopefully still understandable. I’m running off 3 hours of sleep and half an energy drink. Dx
Personally I love tangents, the more the merrier, I say.
I love this post beyond measure. One easy way that I have found to meet adults with autism is to look at the parents of children with autism; many of whom are undiagnosed spectrumites themselves.
Laurie that isn’t a compliment, I mean, hint is it? 😉
Another wonderful post. Thank you, Ariane, for all the friendship, love, advocacy, and above all, RESPECT you show to autistic adults! We have hidden, and many were not diagnosed until adult. You learn to hide, pass, and be ashamed, even in the best of situations. Turns out there is a lot of talent and wisdom in the autistic community, and I truly believe our best choice is to strive for understanding and acceptance, and access in our society, and for autistic adults to mentor as much as possible. Emma and her peers have a much better chance at finding a happy life, but there is still a long way to go. Something to consider that is not being addressed is the delicate transition from youth to adulthood, those years when there are no longer school bullies, and you have not yet found your way. This is a crazy hard time for anyone, but, for Autists, a time of predators and prey. Perhaps fodder for another post? Perhaps something you are not ready to deal with, but I am sure that many have much to say on that one!
Again, I applaud your divine talent and effort on behalf of your daughter and all adult Autists. You are my dear friend. You are our friend ❤
Chou Chou I love that we are friends! You make me so happy!! Ah yes, the time between youth to adult… Care to write a guest post? Would LOVE to have your experience, strength and wonderful perspective on the topic. I know I’m not the only one who would find your words incredibly helpful and insightful. 💜
Oh my, Darling! I am quite taken aback and deeply honored! ( Now, let me see…where DID I leave that bucket of gumption?) I will turn my focus to this idea, once I return from my out of town shows. Once more, dear friend, you test my limits. I will have to step up to the plate! Heaven help us all! Be kind, everybody! XO!
Chou Chou, I keep meaning to tell you…. I sent a question to Ibby on her new blog asking for suggestions as to how I might help Emma with her reading and reading comprehension. She had many ideas, one of which was to have her “act the story out”! So I tried this with Em and she LOVED it!! Lots of energy, very enthusiastic. Then I thought about your idea of having her do a performance with costumes and a tissue bouquet and am thinking of writing a short script that she can act out. Maybe a story about a little girl who dreams of being a singer on the stage! With costume changes and whenever I think of new ideas, I think of you. You are my visual, so you see, you are in my mind all the time! Just wanted you to know. These are not things I would have thought of on my own. What a wonderful difference you are making in all our lives!
Ariane: “Who’s Who in Autism” or maybe, “Who’s Autistic in Autism” — when do you want to start.
Jane – let’s twalk, as they say in New York! 😉
Interestingly, I just had this conversation with my son’s school team yesterday. I was asking that they do more to fulfill his desire to meet more kids like him. they were telling me how there are many kids in his school who are clearly on the spectrum, but the parent’s won’t deal with it or if they do have a diagnosis, it’s not to be shared. 😦 We’re still stigmatizing and erasing.
I’ve found the same: either parents are in denial, are truly unaware that their child is on the spectrum, or they don’t want disclosure because they want to protect their child’s confidentiality (or from bullying.)
I’ll admit that on many occasions I too, wonder if I’m doing the right thing being more open than my parent peers.
I won’t deal with my kids’ autism. I know they’ll face stigma and bullying anyway, but why add to it?
Or, as in Em’s case, segregating, as Emma is in a special education school that resides within a regular public school, but she never sees her NT peers. Em is desperate for more friends too. This Sunday we have a play date scheduled and Em is beside herself with excitement. I’m pretty excited too, actually!
I *loved* Grinker’s appearance in Loving Lampposts. He was one of the few whose explanations made sense to me.
The other parts I remember were negative from parents themselves who talked about the neurology of autism (in a way that is so “wrong it’s not even wrong” anymore, as another parent who made sense to me described) — but this one parent had tremendous indignation when she asked, “where were all the kids with autism when I was growing up?” She meant there is an epidemic indeed, that something is poisoning our children, this something that is here now that weren’t there before, because when she was in school she never saw autistic kids.
I almost shouted at the screen: “Because they were all institutionalized! Unlike your kids, they had no rights and weren’t even treated like human beings! You never saw them because they weren’t allowed to exist!”
Thankfully institutionalization is no longer considered the norm. At least we can be grateful for that!
It’s always good to remember, or keep in mind, the numbers of those being diagnosed with an ASD didn’t start to increase until the DSM began calling it a spectrum and ‘lumping’ all of the various disorders that make up the spectrum, each having its own internal spectrum also, into the same diagnostic heading of ASD, or more commonly known as Autism. Before that the characteristics of autism were very finite, only catching the most obvious or severely affected.
Further broadening of the diagnostic criteria in the DSMIV increased those numbers even more. As the numbers of children being diagnosed began to rise, so did awareness of it which increased the instance of diagnoses again. They are finding many adults were either previously misdiagnosed as mentally retarded, insane, or severely learning disabled when they were children. When these same adults are evaluated using today’s standards, they fall somewhere on the spectrum. These new diagnoses of the adult population, when compared to the current numbers of children are really not that far off each other.
There are also many adults who were completely overlooked and are only now receiving an evaluation and diagnosis. There are also those who are having difficulty finding someone who will evaluate them, either because the people they are seeing don’t have the expertise, or insurance will not cover evaluation of ASD for adults. These same adults were thought to be learning disabled as children, but testing showed them as gifted instead. They had the intelligence, even if they weren’t able to interact correctly with the other children, regardless of how long they sat watching the other children, trying to figure out what made the ‘popular’ or well liked kids, popular or well liked. They would become frustrated because they couldn’t figure out that magic combination of things, no matter what they tried, that would allow them to fit in and make friends.
This was childhood for my partner, my son’s father, and his reality now. After our son’s diagnosis, and we began learning everything about autism and the other ASD disorders and their characteristics, we saw way too many similarities between our son and his father. He has, over the years, developed what he calls coping macros. Little bits of programming that he writes and loads and runs for various different social and interactive situations. He has had to write and rewrite these macros many times because he always finds something that doesn’t quite work. The stress of living day in and day out and feeling literally like he came from a different planet, has caused co-morbid mental conditions to develop, namely agoraphobia, bi-polar disorder and possibly dissociative personality disorder. But not only can he not find someone to evaluate him for an ASD, he isn’t able to get proper diagnosis and/or treatment for his potential co-morbid conditions, because everyone he has seen comes at it from a neurotypical standpoint, and they fail. He is frustrated, to say the least, as am I, because he is not emotionally able to care for our son on his own, rendering me invalid to enter the workforce, and due to having had a break down of sorts back in April, he is on extended medical leave from his work at home job, and has been attempting to get a diagnosis and figure out where to go from here. It makes for a really harsh financial adventure, that’s for sure. He can’t get the assistance or services that could benefit him without a diagnosis, but without a diagnosis he doesn’t qualify for those services; the worst catch-22 ever.
Lara, that’s awful. I’m really sorry.
I’m so happy I found this blog. I’ve been reading everything on here. Hopefully it’s evidence of a growing “epidemic” of reason and clear thinking.
Oh, LIKE…a lot!
💋 Just couldn’t resist. These are so…. YOU!
Much spillage of giggles everywhere! ❤ Ahhhh, a woman of mystery I will never be, I’m afraid 🙂 Mwah!
Aw.. that’s such a nice thing to say, Jack’s Dad. It’s great to see you here, thanks so much for reaching out!
Reblogged this on reflections of a writer.
I often wonder how I got to my late twenties without a diagnosis. I had to chase and ask, it took a long time and it was hard work. Society does stigmatise. Those of us on the spectrum *are* made to feel like outcasts and our behaviours are looked on unfavourably, so yes, we learn to suppress and hide. It’s a temporary fix though.
For me, one of the most amazing thing about twitter and the interwebs is that I have managed to meet some wonderful people, both on and off the spectrum who are accepting and encouraging. Reading all of the blogs you learn that you’re not alone and that’s special.
It is amazing the relationships that come about through twitter, blogs and to some degree Facebook, though I’ve found twitter to be the most surprising. I’ve met such incredible people there, you being one of them!
And I’ve met incredible people on your blog too. As I am older than all of you, I can say that in all my years of undergraduate schooling (1934-1946) I only remember one autistic girl who actually attended my high school. She was very musical, but otherwise had difficulty communicating. Wish I could remember her name so that I could try to locate her and draw her into the conversation. All other sisters/brothers of my classmates were hidden away, or institutionalized. At least 2 in grade school were kept at home but were whispered about, and usually I was not even invited over to that friend’s home. Of course I have no idea what they were “labeled”.
I’ve just finished Roy Grinker’s book. Interesting. Wish he’s read your blog, because as an anthropologist he should be studying what autistics say about themselves, not just about how they’re treated in other cultures as well as ours.
I am not surprised that the French seem to be the least open to new ways of understanding autism. Your father would have had a good deal to say about French schooling!
There’s an incredible French documentary called “the wall” which is an incredible view up close of how the French psychiatrists still believe autism is due to a frigid, unreachable mother. It is one of the more disturbing documentaries I’ve ever seen. I believe it’s still on view if you go to YouTube and type French documentary on Autism it should come up. Incredibly they are at least forty years behind us. Yes, Pop would have had lots to say on the subject!
it’s unfortunate that ‘progress’ represents some questionable ABA techniques in that film. i do have some concerns as to whether withholding water until the child produces an acceptable response might not be more abusive in a way than the lacanian therapist who sits with the autistic child and shares his delight in a bubble.
Yes, there was nothing “great”, more which poison offered is less horrible than the other poison?
Very well written Ariane! Thank you for this.
It is amazing that there are people loudly proclaiming things like “1 in 88 can’t wait” or “it’s an Autism Epidemic” who also try to exclude any Adults who can self-advocate as being too “high functioning” to be “real Autistics” like their children. The ASD numbers are up due to a flood of added diagnosis of children who are part of today’s broader ASD criteria, along with their parents who couldn’t have been diagnosed back when they were children. You can’t have it both ways. If they excluded all those with Aspergers from the ASD numbers then the diagnosis rate would be much, much lower. The numbers are up due to better diagnosis under a broader criteria for the Autism Spectrum.
Back in the day, many a family would do anything to prevent what they thought would be shaming to their family name. They would either put their Autistic children in institutions or, if they had a child who today would be diagnosed with Aspergers, they would try to discipline away any deviation from their ideal of “normal.” And on top of that, Autistic kids were routinely bullied. Back in those days there were no anti-bullying campaigns. You were pushed to “fit in or else.”
This is such an interesting point and one I had not considered before. Yes, they ARE trying to have it both ways and it is incredible! They want the large numbers to support the “epidemic” idea which in turn helps them raise money and yet they also insist at least half if not more of those people who make up those numbers cannot possibly understand what it’s like for them or their children because they are so high functioning and therefore aren’t in need of support! Amazing that this has never occurred to me until I read your words! Thank you so much for this. And thank you for letting me quote you. I really enjoy our conversations!
I wish there was ‘Like’ option like on Facebook! Very well put Aspie Dad! I actually read an interesting research study several months ago done on prison inmates and the rates of ASD. Most inmates are not violent criminals, but are there for petty offenses, serial loitering, trespassing, many times possibly a slight infraction that turned into some kind of altercation when they were taken into custody for doing something a NT person would know would be potentially a criminal offense, and many many of them that have a mental diagnosis, given after incarceration, shows them having some type of schizoid personality disorder, typically NOS. But when these individuals were evaluated by someone familiar with ASD characteristics and their childhood history was taken into account, about 40% were found to fall somewhere on the spectrum. It’s sad to think that many men and women in the prison system are simply adults with ASDs who have been struggling and misunderstood all their lives and are as adults locked away, essentially institutionalized. This goes so much deeper then children being diagnosed today with ASDs and the people screaming about an epidemic are stonewalling these adults out there who are in desperate need of assistance but won’t get it because according to the epidemic supporters, these adults don’t exist.
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Not just hidden but maybe the numbers are highter with the addition of the natural evolution of the human brain. Who is so sure of them selves that we are at our peek or the end of the line in our evolution. Look at all the people on these blogs… all these amazingly wonderful people. I have been wondering about making a book of some hand picked blogs I have found through your blog and some of the things you have posted and giving it to my daughter (age 10) as a gift -If that is okay?-. She is amazing and smart and somewhat a social outcast. She has been off and on again bullied and could use some “I’m not alone” help. We help her to learn how to try to read ‘expected’ behavior but how to do it without losing herself in it. She has it a little bit easier than many on the spectrum becuase she is ‘high functioning’, very smart and, like your daughter, very pretty. When people see her they don’t expect her differences and it is always interesting to watch their face as they try to figure out what is “different”. The ones who take to her get to see what an amazing and wonderful friend she is. The ones who don’t judge her before she even really gets a chance to say much. They miss out on a lot! I have to say I am trying to relax on how protective I am of who is let into her circle but she too is now fully aware that her brother has more friends then she does and would like to make more. It is painful to watch her try and not find enough people who have a good open heart. I love this blog and it is a breath of beautiful air! Thank you!
I have to thank my Adult Autism High School Classmate Melissa Fields: who I not only advocate for, but I also currently serve as her IHSS Caregiver too. No one even knew she was Autistic back in the 70’s. I just know from my own theorizing that the Baby Boomer Generations are going to be in epidemic proportions of Un-Diagnosed Adults, and those figures will be grossly miss-understated because of the lapse of recognition for many decades. Melissa and I graduated from Catholic School, What is most astonishing is that I ran across Melissa at least 3 years ago in facebook and reconnected with her. I have 2 sons with Autism myself. I have become very resourceful to seek out to give Melissa the support she has been lacking for decades. She has never worked in a job or a career and has received a diagnosis back in 2005 at the age of 45 or 46. When she took that assessment to seek out and obtain services she was told her diagnosis wasn’t before the age of 18, thus denying her the adult services she needs. We are on a journey to obtain the correct services to assist her with her remaining years. I myself through the resources with my sons Neurologist, has given me so much knowledge and inspiration. Sabrina U. Carter MD, in Santa Barbara County Center for Child Neurology is one Outstanding physician/psychologist for children from birth up to the age of 18. She encouraged me to seek out and obtain my own testing with a eeg and MRI because of the inheritance of disorders, and other medical conditions that contribute to neurological conditions that tie into proper treatment. I did end up in the ER one evening not feeling good with my own family history Thyroid Disease was inherited from my mother, My sister and I both developed this disease just after delivering our 2nd Child which were both boys. My right side of my face was numb, They did a CT scan and it showed that I suffered a stroke but not a recent one they could see scar tissue, so they referred me back to my physician to obtain a MRI for a clearer picture. When i had the MRI done and follow up 6 months later they came to the conclusion that I suffered from a perinatal stroke at birth. When you have these types of Medical conditions popping up, it makes it very difficult to Obtain services. You see because of the lack of diagnosis I adapted to the change the best I could. I didn’t speak till the age of 5 because i couldn’t speak, I could grunt and point to what i wanted to my mother and we always found a way to communicate that to her. We always had dogs, cats, and Horses and other pets throughout our childhood but it was the Horses who made the biggest impact on me that I contribute my adaption to my environment in school and at home with my social skills. We lived in a huge neighborhood with Several Large Catholic families and had a very tightly knit community in our town with a lot of structure within our family dynamic at home. I attribute the research from the Eunice Kennedy Shriver National Institute of Child Health and Human Development aka NICHD. Their research that was posted on Tuesday August 28th, 2012 is going to be pivotal for Autism and so many other neurological medical conditions. The title of the research is “Stresses of poverty may impair learning ability in young children.” http://www.nichd.nih.gov/news/releases
I do have my own personal blog of my life story and with my sons and so does Melissa who is a very high Functioning Adult and has been articulating very well with her writing. Please feel free to add us both on facebook. here is my blog page http://sher82278.wordpress.com https://www.facebook.com/notes/melissa-fields/about-my-posts-and-writings-and-about-me/10151467493485999?comment_id=25157664¬if_t=note_reply
I was able to find good advice from your blog
The ‘true’ nature of the ‘epidemic’ is more a matter of ‘Normal’ changing: ‘Normal’ has not merely narrowed greatly, but it has also moved toward a representation of the Dark Triad (narcissism, Machiavellianism, and subclinical psychopathy).
To be autistic – at any level, and to any real degree – moves one further away from this supposedly new ‘Normality’.
The truth is much darker: people are no longer being taught to consciously hold Instinct in check (save, of course, if their instincts are faulty. ABA is a common method…). Instead, people are being taught that the sole appropriate means – the only correct way of being – is to act solely by instinct; and more, to subjugate intellect to instinct.
This makes for a more efficient Predator. Such live the Dark Triad. They are, indeed, ‘more normal than normal’ – and their sole modes of expression are deception and manipulation, with both of those things leading to predation; and, those who excellent at these three great truths are – and always have been – worshipped as small-g gods.