#remember: intellectual disabilities (not just autism) were called mental retardation at some point

[joowee-feftynn]

using retarded as an insult completely defeats the purpose of reclaiming slurs btw. you don't see queer people reclaiming faggot/dyke/tranny and unironically using them as insults

[ameliabaggs]

Embarrassing admission:  I’m a savant.  Stick with me and I’ll explain, but it’ll take awhile.

Understand that I’m not saying this to brag.  This is not easy for me to admit to myself, let alone anybody else.  It’s taken me over a year to write this.It’s actually as difficult for me to discuss this as it is for me to discuss the fact that I actually have coprolalic vocal tics.  In fact autistic people’s discussions of savant skills often resemble Touretters’ discussion of coprolalia:  There’s a tendency to try to make out like they’re much rarer than they are.  

About 10% of Touretters are thought to have coprolalia, that is vocal tics that sometimes involve involve swearing or other offensive words (like slurs).  It’s embarrassing to Touretters as a whole because to a lot of people Tourette’s is like a punchline to a joke about cussing.  Similarly, about 10% of autistic people are thought to have savant skills (I suspect the number is higher), and autistic people are just as embarrassed by the fact that savant skills have become a stereotype.  10% is one in ten people. That’s not actually the tiny minority that people would have you think it is.  And I do believe savant skills are under-reported for reasons I’ll get into later.

Some background about myself

I was first recognized as being autistic at the age of fourteen.  I was in a mental institution following a suicide attempt, at the psychiatrist I got was randomly assigned.  In other words, he had no reason to be specifically looking for or expecting autism when I first became his patient.  I would remain his patient until his retirement and subsequent death in my twenties.

Anyway, after he met me, he asked to meet with my parents.  My mother describes him interviewing her extensively about my early development, asking pointed questions about certain things.  She said he very quickly said of me, “Your daughter sounds like an idiot savant.”

A note on terminology

Idiot savant sounds outdated or downright rude, depending on your take on things.  Even in 1995 when this was taking place.  To understand what he was saying, you have to understand the history of terminology around savant skills as well as his own personal history.

So first off -- my doctor was old.  He was trained and did his residency at a time when Southern mental institutions were still fully and officially segregated by race.  His age and specialty in child psychiatry meant that he had met a lot of children over the years, including a lot of autistic children.  It also meant that he used a lot of terminology that would at best be considered quite old-fashioned today, because he learned his clinical vocabulary in probably the early sixties.

Idiot savant does not mean a specific type of savant.  It has nothing to do with the outdated classification of idiot which usually meant what today would be referred to as a severe and/or profound intellectual disability.  There was never an IQ cutoff for being an idiot savant.  Idiot savant meant “wise idiot” and was meant to cover the unevenness of cognitive skills that was characteristic of cognitively disabled people with savant skills.

So him saying I was an “idiot savant” would be the same way that someone today would say “Your daughter has savant syndrome.”  He was not making a judgement about my IQ, which at the time had only tested as high, at the age of five, largely due to the effects of hyperlexia, a learning disability involving early reading ability usually combined with comprehension issues, that is in some contexts itself considered a form of savant skill.

People talked about idiot savants, and then it became autistic savants (except that this term would only be applied to autistic people, who are not the only people with savant skills), and these days it’s savant syndrome. You don’t need a cognitive impairment of any kind (such as autism or intellectual disability) to be a savant:  There are a lot of blind savants, for instance.  Today people mostly just say savant or savant syndrome.  

But definitely understand that idiot savant was its own term, separate from both low IQ/intellectual disability in general and the classification of idiot in particular. In fact, very few people identified as savants throughout history, including when the term idiot savant existed, have ever fallen into the official classification of idiot or any of the terms that replaced it.  

The confusion people have about the technical term idiot savant (mistakenly relating it to idiot in particular or intellectual disability in general) is very similar to the confusion over the term psychomotor retardation.  Psychomotor retardation refers to a mental and physical slowing associated with certain medication side effects as well as a number of conditions such as depression.  It has absolutely nothing to do with the category called mental retardation, a recent but now outdated term for intellectual disability.  They both have the word retardation in them because it means slow, but they refer to entirely different types of (purported) slowness.

Back to my own history

So he called me an idiot savant before he even used the word autistic to describe me.  Both words came up in the first few sentences of that conversation, but idiot savant was the term that came up first.  Savant skills were the first unusual thing he recognized in me.  Within a month, after further interviews, conversations, interaction, observation, and formal testing, as well as consultation with a team of psychiatric and neurologic professionals, he diagnosed me with autism.  Within the description of my diagnosis, he mentioned idiot savant qualities.

The actual autism diagnosis happened in a way that was extremely common in the nineties.  He knew that I met the full criteria for autism.  He told my mother I was simply autistic.  But in the nineties, saying someone was autistic was equivalent to saying “This person will never improve, all therapy is wasted, don’t spend any more money on them than it takes to permanently institutionalize them.”  He knew it would be terrible if the insurance company took this take on me -- which they were already trying to do without that encouragement.  So on paper, he alternated between saying I had a complex and diagnostically confusing developmental disability, and saying I specifically had PDDNOS or atypical autism.  Using PDDNOS/atypical autism as a substitute for a flat-out autism diagnosis was extremely common in the 1990s and had nothing to do with whether you actually met full criteria for autism.  

My diagnosis was changed to autistic disorder later on by the same doctor, after the danger had passed and an autism expert had suggested making the change but suggested I go back to the psychiatrist who knew me the best to confirm that this was an accurate thing to do, since the expert in question did not know my family or have years of observation and testing to go on, whereas my psychiatrist did.  This was after a bunch of misdiagnoses that would take way too long to explain but that were also quite common in the nineties, in fact some of them were among the most common psychiatric misdiagnoses of autistic people.

The savant thing

So... at the time of my autism diagnosis, autism was an abstraction, and a word I did not understand how it applied to my life.  Words like ‘underlying developmental disability’ and ‘pervasive developmental disorder’ and really anything with ‘developmental’ in it might as well have been gibberish.  Even when I heard these things over and over, most of the time I ignored them.  I’d occasionally read a book by Donna Williams or Temple Grandin, identify to one degree or another, but not grasp what autism was any better for having read these things.  And most of the time, while others in my life apparently thought about this diagnosis a good deal, I didn’t.  The savant stuff was way under my radar most of the time as well.

I was an adult before I understood why I was diagnosed with autism.  I was also an adult before I really saw that I’d been labeled as having savant skills or savant qualities, and before my mother told me the story of my initial diagnosis. And to be honest, I mostly ran away from the label, inside my head, and neither said much about it nor thought about it any more than I had to.

Like many autistic people, I was conscious that the popularity of Rain Man had caused people to view autism as inevitably involving savant skills.  Being a savant had become a stereotype.  And Rain Man was an unusually talented savant.  Most savants have neither his degree of savant skills nor his sheer number of savant skills.  He was based on a small number of real people, most notably Kim Peek, who had agenesis of the corpus calosum and a huge number of highly impressive savant skills.

Like many other autistic people, I was very critical of the concept of savant skills.  I thought it was just a way of passing off talents as somehow unexpected or pathological or both, when they happened in disabled people.  I thought it was just a shorthand for giftedness, a concept I have a great deal of trouble accepting as real or useful, at least not as it’s currently defined.  And in many cases it has been used in these ways and autistic people are correct to be suspicious and critical.

And honestly I was afraid of it.  For reasons I still can’t articulate, it really terrified me to face the idea that I might be a savant for real.  But as I discovered, I am.

What kinds of savant are there?

One of the things that had me confused about savant skills was that, like many  people, when I think of savant skills, I think of the most extreme skills.  Those are also the rarest kind of savant skills.  Prodigious savants, as such people are called, are uncommon.  They have never been the most common kind of savant at any stage in the development of the idea of savants in general.

So here are the modern, official classifications of savant.  Remember here that I don’t make up the words for each kind of savant skills and may not  like  them.

Splinter skills are the least spectacular kind of savant skill.  They represent talents that are highly impressive specifically when compared with the cognitive difficulties the person has in other areas.  They are very common among savants.

Talented savants are savants with talents that are likewise in contrast the person’s difficulties, but they would very obviously be things the person would be considered talented for regardless of disability or lack thereof. They are also pretty common among savants.

Prodigious savants are the rarest kinds of savants.  They are people who have skills that would be considered not only highly talented but well beyond the range most people even consider humanly possible for someone to have a skill in.  Like the way Stephen Wiltshire can fly over a city once and then do a detailed and almost entirely accurate sketch of he entire panoramic view from memory.

Knowing these categories, I can see that I have a lot of splinter skills and sometimes veer into the realm of talented savant.  This is a much better representation of my areas of talent than te concept of giftedness in general is, because the the term savant refers to a talent in a relatively narrow area surrounded by areas of great difficulty.  That contrast has been a fact of life for me forever.  Like back when my hyperlexia gained me a high IQ at a time when I literally didn’t know what the word test meant.

Hyperlexia is something that’s sometimes considered a savant skill and sometimes not.  In my case, I feel like it is, because it’s an extreme and isolated talent that came seemingly out of nowhere and that is accompanied by extreme cognitive difficulties in areas that most people would assume to be related to the areas of talent.

I also had musical savant skills.  Perfect pitch is another thing that’s considered a savant skill some of the time and not others.  But the fact that I was first chair, first violin in the junior high orchestra by the age of seven, I can’t read that as anything other than an obvious foray into the realm of talented savant.

Up until I was in my early twenties, I had a spatial (not visual -- closer to kinesthetic, or the way blind people map space) map in my head of every place I had ever been, indoors or outdoors.  I never got lost.  Ever.  I don’t know why I lost this but while I had it, I can’t see it as anything but a savant skill.  My mother, who has severe spatial awareness problems (she’s very visual -- she and I are opposite kinds of proof that visual and spatial are not the same skill), has used me as a navigator since I was a small child,

I also have something that I feel like must be extremely common and not usually recognized at all.  I would call it a partial savant skill.  It’s a skill that isn’t quite a skill because it has no outlet.  I am constantly composing detailed, complex, original cello music without even trying.  But with no way to play it in realtime, and no way to write it down (translating to musical notes is a laborious, slow process for me), the music remains in my head and never shared with the world.  So I don’t know that this counts as a “real”savant skill by objective measures, but it feels like a savant skill with a  crucial piece missing.  I wonder how many people have partial and/or unexpressed savant skills like this.

I think my art (specifically, painting in recent years) falls somewhere in the category of either splinter skill or talented savant skill.  Which may always be a subjective thing, and it’s difficult to judge the quality of your own work.  But this has less to do with some objective measure of quality, and more to do with the way in which the art takes place and the way the skill developed and functions.  Savant skills are more than just the presence of an unexpected skill, there’s specific ways they are learned and function in a person that mark them out as different from your average talent of the same level.

And people do hide their savant skills sometimes, even when they are obvious savant skills.  I am not open about all of my savant skills.  Additionally, not all savant skills are in areas where people normally look for savant skills.  The current savant experts focus almost entirely on certain areas for savant skills, to the exclusion of other skill areas.  

Additionally, many disabled people develop skills that are entirely unknown to nondisabled people and therefore unmeasured and not accounted for in descriptions of possible savant skills.  It is entirely possible, in fact probably common, for people to have savant skills in these unmeasured skill areas.  I am no exception to this.   I have savant skills I can’t even describe because nobody has ever acknowledged the existence of the skills in question never mind come up with language for them.

Anyway, I eventually realized it was important that I face the fact that I have savant skills.  It’s more than a little embarrassing.  It’s not something I wanted to admit to myself.  I’ve spent over a year agonizing about how to articulate what I’d found out about myself.  As well as whether to tell anyone about it at all.

I know a lot of people don’t believe savant skills are a thing.  I have read several books on the topic and concluded that they are a thing.  And that they apply to my life.  I’m not capable of explaining all the details.  And calling something a savant skill is and should be very different than just a way of saying that someone disabled has a talent or qualifies for some definitions of giftedness.  (In fact, I don’t believe in any common concept of giftedness that I’ve ever heard of.  I do, however, now believe in savant skills.  They’re entirely different ideas.)

Anyway, I can’t explain why this was so hard to believe, herd to face up to, and hard to admit.  But it was.  I still can’t escape the fact that I have savant skills, and I’m better off not trying to escape or deny it any longer.  I have to admit that the doctor who first categorized me as autistic was right about the savant thing as well.  As I said, i’m not bragging.  I’m simply publicly admitting that my combination of skills and difficulties -- both current and past, since some skills have vanished and others have appeared over time -- fits the savant pattern perfectly, both in areas that are usually widely recognized as common savant skills and in areas they would never even notice.

[homeofhopeinc-blog]

Travel Journal #2

Nilima has begun her annual HOH Yatra to all the projects supported by HOH in India. This is the start of her 2018 Journey. In this journal she visits Manovikas (from the Hindi mano or mind and soul, and vikas or development). It is a day care center for mentally and physically challenged children from predominantly low-income families located at: 

60 A Radhey Puri-I

Swami Dayananda Marg  Near Jagat Puri Crossing  DELHI 110051 Mobile: 9911107772

www.manovikasfamily.org  E-mail: manovikasy2k@yahoo.com

Hope in the Horizon on World Autism Day   It highly co-incidental that I am in Manovikas and today is World Autism Day. Going down memory lane, I can vividly remember the year 2000, when I had entered a dark dingy basement which was MV (Manovikas). Many of these children gazed at me with a very empty and vacant look in their eyes, and I noticed the hand rolling motion of these special kids. After this, HOH funded the Candle Making Project. We all felt very pleased with ourselves and our noble deed… Little did I realize the limited darkness of my mind set. There was pity in my heart for these kids who at that time were called “mentally retarded“; today, this is a politically incorrect word that has been replaced by the word IDD (intellectually and developmentally disabled). Today, I am grateful for MV. MV was the candle that removed the darkness in my mind, and it opened my eyes to the true potential of these kids.    Now, 18 years later, I walk into Mano Vikas with Board member Rita Sharma, welcomed by my favorite person- wonder boy Manuj, who is now the Governing Board member of Manovikas. I have told the story of Manuj in my previous travel journals. From a special child (victim of cerebral palsy) to the proud Board member of Manovikas, he has come so far. Such miracles can only happen in the land of Manovikas, which is the world of empowerment and hope for these special kids.   An Amazing Interactive Event   I attended an event, organized by Alok and his team. It was an interactive program with the staff, parents, teachers, governing board members, advisors, and students. In all my 18 visits, I have never experienced anything quite like this. In Alok’s words “you should hear directly from the stake holders of MV”. The entire journey of MV was presented in 2 hours. This included the different programs developed through the years. For example, the Manovikas school for inclusion, which is the major and oldest program supported by HOH. The other programs include the Manovikas Institute for higher education, sath sath quality of life center, and the skill knowledge program of CBSE .   A special mention about the newest program in MV called ARRABH, which is a child care center for special kids working with the families for their inclusion in main stream schools.   Of course, how can I not mention the ACE LAB (ARRYAMAN CENTER FOR EXCELLENCE). This was created in the memory of my dear nephew Arryaman by my family and is also supported by HOH. Today this lab has become the epicenter of MV. I was impressed to note that it was more colorful and vibrant thanks to the recent renovation. The lab is more high tech (Arryaman must feel so proud). Umesh the teacher, showed how the ACE LAB is teaching multimedia following the pre and post production processes.  ACE truly has become the central hub of MV. About 230 students use the lab in a year, 124 hours / month and 2000 hours in a year;  Vartika (the special educator) gave a detailed power point presentation of the lab. A Very Emotional Moment   Today, we heard the stories from the parents. Tears were streaming down my cheeks when I heard the heart wrenching stories from these moms…   GUNJAN’s MOM: Gunjan has autism with severe disability and behavioral problems. Gunjan came to MV when she was 5 years old. She was not accepted in the family and was shunned by society. The mom was heartbroken and felt as if her life was over. She sobbed uncontrollably as she recalled her days of misery. Now, after 2 yrs at MV, there has been a remarkable change. Gunjan‘s social skills have improved and she is welcomed by both society and friends. She thanked MV from the bottom of her heart. In her words “my daughter is now welcomed into homes which brings me immense joy.“    SHWETA’s MOM: Shewta was born a normal, healthy and beautiful baby. At the age of 6 years old she developed meningitis and then developed IDD (intellectual delay with mental retardation). Today she is 37 yrs old and is still child-like. Her mother hugged me and sobbed. Her concern was what will happen to Shweta after her death. MV does NOT have a residential girls hostel. It broke my heart to hear her say this, and as a mother I understood her pain and worries. I just hope and pray that there is some donor out there who will fund a residential facility for girls. It is a great idea to keep the legacy of any family alive. The hostel will be named after that family.   The Cultural Program   Are these kids really special kids? That was the question in my mind when I watched these kids dance. They danced so well, almost like professionals with their hand and body movements in unison. Especially 11 year old KAKA, who danced with such beautiful rhythm. It is hard to believe that he is a special child with IDD- boys and girls with mental disabilities should be belittled down to just their disorders. Success Stories   Charanjeet Kaur- the story of Stones to Apples: In 2016, I met this brave young girl. She had severe intellectual disability and behavioral issues. Unfortunately, the community used to abuse her, so she began to carry stones as a mode of protection for herself . She joined quality of life program at MV based on WHO quality of life index. After 3 years there, she has seen a remarkable change. She  now carries apples instead of stones and distributes it to her friends .She then joined the , 6 month hair stylist program and is spearheading this program in MV and has inspired over 30 girls to become hair stylist . Krishna Anand: Krishna has IDD and behavioral problems. He came to MV 6 years ago. He was able to pass the 12th grade, and today he has a job at Sodex for Rs 8000 in hospitality division. Indermohan:  He has Intellectual disability and emotional disturbance. His parents sent him to MV last year; he loves computers and was able to enroll in the one year domestic data entry course in our ACE lab. Today, he spoke with such confidence and poise. He dreams to join the IT work force. Rita and myself left MV feeling very humbled by all that we witnessed today. Words cannot do justice to the selfless commitment and dedication of this amazing team of Manovikas. It is projects like MV where hard earned Donor Money is truly justified; we should try and increase the funding through individual Funders and Grants, it is amazing what the money can do for these people.   HOH feels so blessed and privileged to partner with MV, a true haven for these special children whom have been discarded and boycotted. They have their community and sometimes even their family turn their backs to these poor souls. Today MV is the voice in India for these kids with disabilities.