Tag Archives: Autistic Advocacy

Why I’m Happy I’m Not Gifted After All

In 1999, I had a psychologcal evaluation done. Included in it was the verbal part of the Wechsler IQ test for children (WISC). The performance part can’t be administered because I’m blind. My verbal IQ score, according to the report, was 154. This indicates I may be gifted.

There were several problems with this test, the most importnat being that I’d had the exact same test a year earlier. Now i must admit the psychologist who tested me in 1998 also estimated my IQ as in the gifted range.

In 2002, I had the verbal part of the Wechsler IQ test again as part of a research project on former preemies. I scored above-average, but not gifted. I blamed this on the new version of the WISC being used and continued to use the score of 154 as my official IQ score and proudly showed it off wherever appropriate. In fact, I used it as my official IQ score up till a few months ago, when I had the verbal part of the adult Wechsler test as part of my autism re-assessment. It showed I have an above-average IQ, in line with my high level high school education, but definitely am not gifted. My verbal IQ as of 2017 is 119.

When I told my parents I suspected I didn’t score as gifted on the test this year, my mother responded with: “You just don’t want to know about it.” She seemed to mean I underestimated my achievements, but did send me the message that I was supposed to be gifted or I didn’t try my best.

IQ, of course, is not a static characteristic. Before the Flynn effect was known, researchers thought people’s intelligence started decreasing in their late twenties already. I don’t know much about the science of changing scores on IQ tests, but I do know many factors contribute to one’s performance. Like the letter written to me at the end of the 2002 research study said, it’s just a snap of a moment. Maybe my IQ did really decrease as a result of my having been out of education for ten years. Maybe the medication I take has a dulling effect on my cognition. Maybe, like I said, the score in 1999 was based on retest bias. I do care in some ways, because I don’t want to be “dumb”. Then again, an IQ of 119 isn’t “dumb” and labeling people with a lower IQ as dumb is ableist and classist anyway.

However, I am also happy that I am no longer labeled gifted. I can still say I’m smart and people will acknowledge it, but I don’t need to carry the burden of being seen as “hyper-intelligent”, as my father once coined it.

There are a lot of ideas about gifted people that just don’t apply to me. Now some of these ideas are really prejudices, so the solution isn’t to distance myself from the community. However, within the gifted community there is also the assumption that people who are gifted naturally struggle with social and emotional development, unless they interact with people of their intelligence level. I embraced this idea before I was diagnosed with autism. I still understand it bears some truth. However, my take on diagnosing misfits is pragmatic: if an approach suited to one population clealry doesn’t fit, then maybe the person in question doesn’t belong to (just) that population after all.

Now you could say I’m blind and (supposedly) gifted, so I really should be given services for blind people who are gifted. In other words, it’s no wonder I struggled at special education, because most kids there are not of my intelligence level, and of course I struggled in high school, because no other kids there are blind. I can tell you though that there may not be many blind and gifted people, but they certainly are there and I struggle with interaction with them too. Besides, no-one ever gave me the opportunity of going to a high level special education school.

I don’t honestly know why, interestingly, people prefer my supposed gifted identity to my autistic identiyt when they want to choose one. I prefer my autistic identity, because it fits better. For others though, there seems to be something inherently wrong in autism and something inherently fabulous in giftedness. This goes even for people who keep telling me that all gifted people struggle with social interaction and behavior so I don’t need my autistic identity for that. Well, why then not say I don’t need my gifted identity for that?

The Other Kind of “Pushy Parents”: My “Mind-Blowingly High” IQ and My Need for a Disability Label

I originally intended to write a post on my experience of the other kind of “pushy parents” when the “Hooked on Labels” report first came out. However, I felt somewhat kept from disclosing my parents’ take on what might or night not be wrong with me, because after all I’m still in the assessment process. A rather hurtful comment by my father last Friday made me want to write about this anyway.

By the other kind of “pushy parents”, I mean parents who deny their child a disability label or services for special needs children when the child needs this. Of course, I do have a disability label – I am blind -, and of course, I did go to special ed. It was clear to my special ed teachers and professionals that I had social, emotional and behavioral problems, among other issues, for which I needed help. Most of them however denied my high IQ. As a result, my parents fought for years to get this recognized and to get me an academically challenging education. They eventually won, only to have me go back into the care system after six years of mainstream secondary school.

My parents are incredibly disappointed in me. My father last Friday even went so far as to say that, in a contrived kind of way, I alwasy manage to end up in institutions. Somehow, with my mind-blowingly high IQ, I manage to always manipulate professionals into providing me support I don’t need.

Never mind that my IQ isn’t as mind-blowingly high as my parents would like to believe. My verbal IQ was once measured at 154. This is within the highly (not exceptionally) gifted range. This IQ score was measured exactly once. Other times, I scored much lower, usually around 130. My performance IQ can’t be measured on the Wechsler scales, because I am blind. There is a non-verbal intelligence test for visually impaired children (unfortunately there’s no adult version). I got it administered when I was eleven, but had so much trouble and was so easily frustrated that the ed psych couldn’t finish the test. Of course, my parents likely reasoned that this wasn’t due to poorer non-verbal skills but due to my refusing to do tactile assignments because I didn’t accept my blindness.

And of course, there is no reason for that low frustration tolerance and all the social, emotional and behavioral challenges I’ve ever had, except for my refusing to accept my blindness. My parents say I didn’t have behavioral challenges at all until I transferred to the school for the visually impaired. Makes me wonder why I had to transition at all, since it wasn’t because I had to learn Braille. After all, I transferred in the middle of Kindergarten and didn’t start Braille lessons till second grade.

However, even if I didn’t have obvious behavioral problems – ie. aggression or self-harm – as a young child, I definitely did show signs of social and emotional weaknesses and sensory issues. I was intrigued by strings of information, had trouble relating to other children and had stims and sensory aversions. These may not be problems a parent pays attention to when 1. the child has low vision and 2. the parent believes the child is mind-blowingly intelligent.

I understand some peculiarities in a child can be cute. I remember, for instane, my father bringing me the home supermarket’s peanut butter in the hospital because I wouldn’t eat the hospital’s brand. I was about five then. I remember my mother searching every clothes venue in town because I would only wear seamless socks. My parents were proud that, at age two, I had memorized the underground stops. My parents didn’t mind that, at the same age, I made this crawling-in-one-place movement in bed. They were surprised when I still did it at eight, frustrated when I still did it at twelve and outright angry when I still did it at eighteen. (For those who wonder, I stopped this behavior when I went to independence training at age nineteen.) All of these are potential signs of autism or similar disabilities. I wouldn’t have minded my parents denying that these are potential signs of a disability if they’d always accepted me for them. But they didn’t. Instead, they grew increasingly angry with me for my idiosycrasies. In fact, my self-discovery process relating to autism started with my father using “autistic” as an insult. He should be lucky that I cared to google the DSM criteria before self-identfying with a disorder that he’d insulted me with, or I’d have far more self-diagnoses than I ever had.

And here I am at age thirty, nearly fifteen years into my discovery process with regards to autism. Suddenly, somehow, the behavior that my parents found cute when I was two but were desperate for me to change when was eighteen, is no longer a problem. My mind-blowingly high IQ is, because I use it to con people into believing I deserve a disability label and services that I don’t need.

One last point. Suppose I do really have as mind-blowingly high an IQ as my father claims I do. So does he. Suppose I could use that mind-blowingly high IQ to manipuulate every single professional around me. So could he. So who out of us is the one who is being manipulative? Think on this.

Spectrum Sunday
Hooked on Labels - responses & other relevant posts linky

If I’m Not Autistic, What Am I?

My psychologist removed my autism diagnosis, which I’d been first given in 2007, last summer. After a long process of negotiations, she decided to diagnose me with dependent personality disorder, borderline personality disorder traits and depressive disorder NOS. I strongly disagree particularly with the DPD label, but more importantly, I want my autism diagnosis back. I requested an independent second opinion, which I’ll be getting the first appointment for this Thursday. Just this evening, I told a leader of an autism group in the Netherlands that I’d be closing the autism chapter if the second opinion provider agreed i’m not autistic after all. Then I’d definitively consider myself, well, what? I’ve rarely used the word “allistic”, which is someone who isn’t autistic. I feel that all people with neurodevelopmental conditions essentially fall on the same spectrum. Many autistics disagree and would not allow, say, a person with ADHD into their community. Indeed, if I’m not autistic, I’m allistic, period.

There used to be some concept of “cousins” in the autistic community, which included people with other neurological or neurodevelopmental differences, such as ADHD, Tourette Syndrome or hydrocephalus. Maybe I could consider myself a “cousin”, since I was at one point diagnosed with hydrocephalus and that’s a far more hard-wired diagnosis than is autism. So I’d be an allistic cousin to the autistic comunity. The concept of “cousins”, however, is barely accepted anymore.

Besides, it’s not just about community. It’s about identity. If I’m told that after all I’m not autistic, a vital part of my identity is being destroyed. Someone compared it to losing their status as an animal lover. It’s far worse. It’s like being told I’m not blind – there is another reason I’m unable to see, but that’s not called blindness. Besides, there’s no ICD-10 or ICD-11 or where are we these days code for it. This is analogous to what my psychologist has done with respect to my autism: it isn’t there, because there is another reason I have cognitive and sensory and social-communicative difficulties, but there’s no DSM-IV code for that.

It affects services, too. If I lost my status as a blind person, I would no longer be allowed to use my white cane. I would no longer be provided with reading materials in accessible formats. I would no longer have access to services for the blind. If there’s no ICD-whatever code for explaining my lack of sight, there won’t be any other way to gain access to these accommodations or supports. I can imagine this is in part the reality for people with conversion disorder manifesting as blindness, since some service and accessible reading material providers ask for verification of the “physical basis” of one’s blindness.

If I lose my status as an autistic person and there’s no diagnosis to replace it with, I’ll not be able to access services that take into account my cognitive, sensory and social-communicative difficulties. In fact, my psychologist has already voiced her disagreement with me applying for day activities for people with traumatic or acquired brain injury. She says I have “congenital brain injury”. At least, that was her reason for removing my autism diagnosis. Since “congenital brain injury” isn’t acquired or traumatic brain injury, I won’t qualify for services for that. Since in fact “congenital brain injury” does not exist in the diagnostic handbooks, there is no help for it. It’s worse even than conversion blindness, since that can be treated somehow.

Now imagine that I, who clealry has an eye condition causing blindness, were told I had conversion blindness for lack of a better diagnosis. That’s about what it feels like being diagnosed with dependent personality disorder as a clearly neurodivergent person.

It could be worse. I could be told I’m not neurodivergent at all. This would go beyond saying I am an unfortunate case of falling between the cracks with my useless diagnosis of “congenital brain injury”. To use the blindness analogy again, this’d be like being told I am fully sighted, yet only believe I’m blind for attention, because I don’t accept my status as a short person, or whatever nonsense claim people have made as to why I erroneously believe I’m neurodivergent. This is a possible outcome of my second opinion too. After all, though I have hydrocephalus, there is no proof as per a neuropsychological evaluation that this has caused me lasting impairments. My psychologist is of this opinion to an extent and so are my parents and sister, believing I have problems because I think I do.

Back to my autism diagnosis or the lack thereof. Some people say you’re autstic if you’re autistic no matter how many professionals say you are not. They say that, if support tailored to autistics, including being part of the autistic community, works, you must be autistic. With my poor self-image, I’m not so sure this would be the case for me.

Thoughts on Self-Diagnosis by #ActuallyAutistic People #SelfDXIsValid

Today, Autistic Zebra wrote an interesting post on self-diagnosis by autistic people. They are a self-diangosed autistic who have no intention of seeking an official diagnosis. They embrace the hashtag #SelfDXIsValid on Twitter, a hashtag used to make it clear that you don’t need a professional diagnosis to be autistic.

I was “self-diagnosed” for years before my official diagnosis in 2007. At the time, I didn’t like the word “self-diagnosis”, because it presumed people who “self-diagnose” are akin to professionals making an official diagnosis. I felt people should state, as is the norm in the Dutch autistic community, that they suspect they are autistic. I myself didn’t even want to post to a main autism forum, even though I’d been reading it for a few weeks, till the day I got my official diagnosis.

Years went by in which I remained officially diagnosed. I had no problem with self-diagnosed people, even though I (not always consciously) often saw them as less obviously autistic than I saw those who had an official diagnosis. The reasoning was that, if they were struggling as badly as those who needed an official diagnosis were, they would’ve been formally diagnosed. I based this reasoning upon the way I had myself been diagnosed: I was falling apart and the staff at the home I lived at at the time, sent me for diagnosis. Now I realize how lucky I was to have had staff who suspected autism in me and not, say, dependent personality disorder.

Now that I’m no longer formally diagnosed as autistic, I can see that not everyone who struggles with autistic issues can get a formal diagnosis or gets one right away. I do not struggle any less than I did when I still had an official diagnosis.

I am also more aware that professional diagnosticians are human too with their own weaknesses and strengths. Some use “clinical judgment” only, like my current psychologist. She flat out denies I can or should receive any testing. Others rely heavily on testing or on developmental interviews. Professionals also have different areas of expertise. My first diagnosis was made under supervsion of the psychiatrist at the autism center in the city I lived in at the time. My second diagnosis was also made by a psychologist with expertise in autism. My third official diagnosis, which was partly based on the second, was made by a psychologist with mainly expertise on blind people.

When I lost my formal diagnosis, I became incredibly distressed. It wasn’t helpful that some autistic people said that no longer having a formal diagnosis meant I wasn’t autistic after all (and had never been). Supposedly my nine years in a mental hospital made me act autistic (desptie the fact that I was first diagnosed before I was hospitalized). Some of these people also twisted my words by saying I was going for a “second or how-many-have-you-had-already opinion”. The truth is none of my diagnostic assessments or changing diagnoses were at my own request, except for the current second opinion I’m waiting for. Besides, if three diagnosticians say I’m autistic and one says I’m not, apparently that one last diagnostician is right and those how-many-have-I-had-already who validated my autism “self-diagnosis” are not.

Of course, there may be people who self-diagnose who aren’t actualy autistic. However, by the logic that I’ve been hearing over the past half a year, there are also officially diagnosed autistics who aren’t autistic after all. Indeed, I did not suddenly become non-autistic when my psychologist dropped my diagnosis. Either I am still autistic or I never was.

Dear Psychologist: Why I Believe I’m Autistic (And Why It Matters)

My psychologist wrote the referral letter for my second opinion last Wednesday. Because this second opinion thingy is now becoming real, I have been thinking of why I believe I’m autistic after all – and why it matters. I have tried to explain this quite a few times already, but nobody amongst my staff seems to understand. Because some of my readers just might actually get it, I’m writing it on my blog. I chose to write this in the form of an open letter to my psychologist, but I’m not sure I’ll ever consciously point it out to her.

Dear Psychologist,

You have been telling me ever since you became my responsible clinician in late 2014 that you don’t believe I’m autistic. You initially said brain injury explains my symptoms far better, but you seemed not to care. We needed to treat symptoms, not syndromes, you said. Yet last summer, you changed my diagnosis. And you changed it again. And again. You claim this was at my request. Fair enough, I told you I wasn’t happy with just a borderline personality disorder and adjustment disorder diagnosis and I wanted a second opinion. However, it was you who offered to change my diagnosis to brain injury-related personality change, apparently to avoid me getting a second opinion. I was stupid enough to go along. The further diagnostic changes were solely your responsibility.

Yes, I told you it doesn’t matter whether my diagnosis is borderline personality disorder and adjustment disorder or dependent personality disorder, BPD traits and depressive disorder NOS. To me, neither diagnosis explains why I’ve been having problems all my life. After all, personality disorders first become apparent in a person’s teens or early twenties, not when a person is a young child.

There were – or at least, there should’ve been – many signs of a developmental disability when I was young. Even things that my parents tout as signs of genius, should when combined with the signs that point to delay, signal a developmental disability. Like my ability to calendar calculate. Or my first word. It was “aircraft industry”, echoed from my grnadpa when I was ten-months-old (seven months corrected).

These are cute factoids about me. They don’t necessarily signal autism when taken alone. Then there are the signs that point to delay. I had motor skills delays, but these could be due to dyspraxia or mild cerebral palsy. My parents don’t know whether these were ever labeled as such. I was a toe-walker – still am when stressed. Though I walked on time (at fourteen-months-old), I didn’t sit or roll over without physcal therapy intervention.

My language development was quite advanced. I did reverse pronouns, but my parents say this happened only for a short while. I took many things literally growing up. I also had one word that I’d use obsessively and often out-of-context after another. The psychologist who diagnosed me with Asperger’s in late 2007 brushed this off because I couldn’t come up with examples right then. I can now, but I don’t have the energy to elaborate in English.

My social and emotional development was delayed from a young age on. Even though I didn’t have many meltdowns or temper tantrums until I was about six, I did have my problems. I couldn’t talk to children my age. I had trouble forming friendships. I was even more self-centered than any young child.

When I became aware of my differences, I started acting out. Educational psychologists blamed this on my difficulty adjusting to blindness. What if I’d become aware of my social difference then, too? Even though I didn’t start regularly having temper outbursts till I was about six, I remember head-banging and hand-biting from a younger age. I also had this crawling movement in bed that parents of other kids went to the doctor for when the children were toddlers. Well, let me tell you I did this till I was nineteen.

When I became a teen, I had many more difficulties. One could no longer blame my high IQ, because I was in a high-level high school were 30% of the students were intellectually gifted. Maybe then I did it all because I’m blind, even though no-one at the school for the blind had displayed these behaviors either. Or maybe I was precocious for developing a personality disorder. I guess your logic would go like this.

I could give you dozens more examples of why I believe I’m autistic. I have been thinking on these for the last few days. Many, however, are just too embarrassing to go on my blog.

My parents may not be involved with my care now, but you never asked them participate in a developmental interview. Not that I’d want you to do an autism assessment on me, after all the flawed arguments you’ve spun. You won’t believe that someone with hydrocephalus can be autistic, even though there’s plenty of literature showing that they can. You won’t believe that preemies are more likely to develop autism than children born full-term. I even didn’t bother correcting you when you wrote in my referral letter that I had had a stroke. News flash: an intraventricular hemorrhage, which is the most likely cause of my hydrocephalus but was never ascertained, is not a stroke. I don’t expect you, a psychologist, to know the difference, but then at least stop basing your diagnosis on it.

But you’ll say we should look at symptoms, not syndromes. You’ll say it doesn’t matter for my care whether I’m diagnosed with brain injury, even if it isn’t in my DSM-IV classification, autism or a personality disorder. To be honest, the main reason this whole diagnosis thing is important to me, isn’t care. It’s understanding. I need recognition of my struggles. I need to know I’m not the only one. As much as you hate this, I need something I can google and join support groups for. I’m tired of shooting in the darkness. Granted, care matters too. Personality disorder patients have far fewer self-care problems than autistics and warrant a totally different approach. I wouldn’t mind that approach if it turly worked for me, but it doesn’t. However, I don’t mind having a personality disorder diagnosis along with autism – I had one for nearly three years.

You won’t understand a thing about autistic culture. I won’t explain. I don’t have the spoons for that. (Google the spoon theory if you want to know what I mean, if you even care.) Suffice it to say that autism is not just a disorder – it’s an identity. It’s something, unlike brain injury, that is part of us before we’re old enough to realize it. It’s not a disease – it’s a part of who I am.

Hannah Spannah

A Call to Revive the Concept of “Cousins” in the Autistic Community

Today, I was rejected from a Dutch autistic women’s forum. I had already been kicked off last August for having lost my formal autism diagnosis, but had reapplied because I am in the process of getting a second opinion. Back then, my losing my diagnosis had stirred up a lot of commentary as to why I’d been presenting as autistic for six years – the time that I’d been a member of the forum – if I wasn’t. Well, for one thing, that’s just one professional’s opinion that I’m not autistic, while three others said I am. Not recently, but since when does one lose an autism diagnosis as one ages? However, the fact that the admins doubted I’d get anything but suspicion and hostility if I came back, prompted them to reject me for good. Thankfully, people in other autism groups, especially international ones, were still welcoming and supportive.

Then I read Mel Bagg’s blog post from last month, which was on the subject of autistics and “cousins”. A “cousin” is someone who is not autisitc, but who has some significant experiences that are similar to those experienced by autistics due to a related condition. For example, Mel Baggs tells the story of a person with hydrocephalus who could relate to many of the social and communicative difficulties that autistics experience, but wasn’t autistic. As I have hydrocephalus myself, this struck a chord with me.

Mel Baggs”post is a call to revive the concept of “cousins” in the autistic community. I applaud this, for it’d finally mean I could fully feel in place in the autistic comunity again. I mean, autistic communities used to ask that no neurotypicals join or participate. now they’re asking allistics – a term I’d never heard of but which means non-autistics – to keep out. Though most internatoinal communities who state allistics are not allowed, welcome self-diagnosed autistics, I still feel a bit left out.

Like Mel Baggs says, the autistic community can be very excluisionary. An example is the Dutch forum I got kicked off from. I didn’t know this until I lost my diagnosis, but apparently it has the rule that people who suspect they’re autistic get a year to get a formal diagnosis and if they don’t get it, they’re out. I mentioned this is a women’s forum for a reason, because women have a particularly hard time getting formally diagnosed. The other main Dutch autistic community, open to all genders, doesn’t ask for a formal diagnosis. Another act of exclusion applied by autistic communities is the assumption that Aspies (people with Asperger’s Syndrome) are somehow fundamentally dfferent from other autistics, and subsequently the creation of Aspie-only spaces. Other groups allow “high-functioning” autistics in only. This, obviously, perpetuates the division of the autistic community, which perpetuates discrimination. For example, if Aspies are fundamnetally different from other autistics, people can use the idea that Aspies are not really disabled, which is populated by some, to exclude anyone they see as an Aspie from protection by laws like the ADA. They can also continue advocating for harmful “treatments” against autistic people’s wishes based on the idea that autistics who can advocate for themselves are not “autistic enough”. I don’t say that the autistic community is responsible for discrimination by non-disabled people. I do say that those who exclude some people from the community based on being “not really autistic”, “not autistic enough” or too “low-functioning” or “high-functioning”, do contribute to it.

Back to “cousins”. The criteria for autism keep changing over time. I easily met DSM-IV criteria for Asperger’s Syndrome. I probably meet DSM-5 criteria for autism spectrum disorder too. However, I also have hydrocephalus, which according to my current psychologist, means I can’t be autistic. I believe DSM-IV might agree, though DSM-5 definitely doesn’t. Does the fact that I meet the criteria for an autism spectrum disorder, mean I’m legitimately autistic, or does the fact that I have hydrocephalus, mean I’m not? Really, that shouldn’t matter, if “cousins” are welcomed into the autisitic community again. After all, what counts then is not diagnosis or self-diagnosis, but whether I relate to the lived experience of autistic people. It also means the community can no longer be divided along the lines of stereotypes, formal diagnosis or the lack thereof, or suchlike. Everyone who shares the experience of social and communication problems, is welcome. This in turn means we can form a better front against discrimination, because we no longer fall into traps like being accused of not being disabled enough for protection.

Autistic Adults and Independence

I skipped a day of the September blog challenge because I was at my parents’. I had a good time. Today I came down with a cold, so am not really in the mood for writing, but I’ve got to keep up with the blog anyway. Besides, I just have to write my own spin on autism and independence, which Pam Byrne wrote an interesting post on.

Pam is the mother of an autistic adult with signifcant care needs. Though I am probably more capable in some ways than Pam’s son Alex, I am an autistic adult with significant care needs. I used to also be an autistic advocate, fighting for the rights to proper care and services for autistic adults. I always said autistics should be allowed to live and work in the community. It took myself being institutionalized to learn that society isn’t prepared for that. Of course, we should fight to get society prepared, but not every autistic person or parent of an autistic person has the resources and time and energy to do so. I bet most do not.

I remember back in 2010 or 2011 reading some research that said most autistic people attain a relatively normal level of independence, but do so around ten years later than most neurotypical people. I do not remember whether the research included autistics with co-existing intellectual disability or other additional needs. Even if it did, there still will be a significant number of autistic adults who do not reach expected levels of independence. For example, as Pam also says, the unemployment rate among autistics is about 70 to 80 percent. You could again put this down to discrimination. I won’t. After all, even the most willing employer could not employ me.

Maybe if I’d gotten early autism intervention, I would’ve been more independent than I am now. Maybe. Maybe not. Maybe it wouldn’t have made a significant difference, because my biggest problem is not a lack of practical skills. It is the fact that it’s not safe for me to be without access to support.

Of course, we need to teach autistic children and adults the skills to become the best they they can be. However, there are some skills some autistic people will just not learn. We could advocate for more applied behavior analysis training for older children and even adults with autism. I won’t. I don’t have the energy to go into all the things that are worng with ABA. Let me just say that I for one am completely overwhelmed with intensive skills training. Instead, we need enough supports to make sure autistic people can live a fulfilling, satisfying life.

Everyday Gyaan

“You Are Not Like My Child” #AtoZChallenge

Welcome to day 25 in the A to Z Challenge on autism. Wow, we’re almost done! Today, I discuss a statement often made by parents of “low-functioning” autistic children towards adults with autism: “You are not like my child.”

This statement is often used to discredit adults with autism who want to advocate against a cure or who want to advise parents against certain treatmets for autism. In a way, oof course, the parents are right, in that no-one is exactly like their child (not even that child’s hypotehtical identical twin).. Of course, parents have the right to make decisions about their child’s health, so it isn’t like an adult with autism has the right to make that decision (unless the adult happens to be the parent of an autistic child too).

However, this usually isn’t about adults trying to make decisions for other people’s autistic children. I for one recognize parents’ decision-making rights and I have never directly intervened in a parent’s decisions that I did not agree with. However, the parents in this situation often use these words to discredit autistic adults trying to advocate for themselves and their right to remain the best autistic people they can be.

I, in fact, have had people tell me that, unless I agreed that I was nothing like their autistic child, I should get a fad treatment to get cured of my autism. This disrespects adults’ rights to make medical decisions for themselves.

Another aspect in which parents and adults with autism have opposite interests, and in which this statement is often used, is representation of autistic adults in organizations like Autism Speaks and the Autim Society of America. It is a fact that thse and other such organizations have few or no autistic adults on the board of directors. Autism Speaks used to have John Elder Robison as a poster puppet, but that’s about it. In few other disability communities do parents say that adults with said disability cannot represent themselves, but in the autism community, it is a common idea. When Ari Ne’eman was eelect into the National Organization on Disability, parents everywhere protested. Now I for one do not agree with everything Ne’eman says and I do feel he’s a bit too inexperienced to serve on a government advisory board. However, I do not see why, just because he isn’t a parent, he can’t be on the board.

Let’s face it: we are not like your child. We are adults. However, autistic adults at one point were autistic children, and many had the same problems today’s autistic children are facing. Parents could learn from how we coped.

I do not say that there are no autistic children with an intellectual disability or who are non-verbal, but there are autistic adults with these challenges too. Also, if an autistic adult appears to function well now, it doesn’t mean they functioned as well as a child – or even that they function as well in real life now.

I consider myself a moderate mama on many debatable autism issues, but one thing I can’t stand is being silenced for being disabled. This is exactly what the “You are not like my child” crowd do.

Vaccines and Autism: Stop Beating a Dead Horse #AtoZChallenge

Welcome to day 22 in the A to Z Challenge on autism. Today, I focus on a very controversial subjects: do vaccines cause autism?

The answer to this question could be very short: no. The Autism Science Foundation has compiled an exhaustive list of studies on the subject, which investigate pretty much every aspect of vaccines that the anti-vaccine community has blamed for autism, including whether vaccinated children are generally more likely to be autistic than non-vaccinated children. The anti-vaccine crowd have consistently demanded such a population-based study, but several were published and they still believe vaccines cause autism.

The problem is a little more complicated in one tiny aspect, and this is the fact that the general autism community believes that autism is purely genetic. This has not been proven, and the anti-vaccine community has a point to suggest environmental factors in general could be risk factors for autism.

What if avoidable environmental factors, such as vaccines, did cause autism in genetically vulnerable children? After all, we know that vaccines and other environmental factors carry risks. It is easy to say that no more vaccinated children are autistic than non-vaccinated children, for example, but what if a multitude of environmental factors, including vaccines, could contribute to autism? As a parent, after all, you’re not dealing with a population of vaccinated and unvaccinated children; you are dealing with your own child.

You have to weigh risks. With vaccines, however, the problem is you run the risk of losing herd immunity if you and a lot of parents are not vaccinating. Herd immunity is the condition in which a disease has been extinguished due to a large part of the population being immunized to it. This is tough, because you are not dealing with the entire population as I said; you are dealing with your child. It is not like, if you don’t vaccinate, they are guaranteed to die of the disease the vaccine protects against, but another child just might. In this sense, while I advocate parents’ right to make decisions about their children’s health, I urge parents to be responsible.

Another problem is that the vaccine controversy hinders research into other environmental and genetic factors that might cause autism. For example, many people using biomedical interventions for autism find that their child has (or is thought to have) a lot of things wrong with them, including for example food intolerances. What if the key to finding the cause of autism lay in fact with such other, often trivialized, biological factors? It is understandable that parents who are part of the pro-biomed community are discredited, because they keep insisting vaccines cause autism in spite of overwheming evidence to the contrary.

Research is not advanced if people advocating for it keep asking the same questions that have been answered a million times. If you truly want to prevent autism (which I for one don’t, but many parents do), support research into a variety of enviornmental and genetic risk factors and stop beating a dead horse.

Neurodiversity #AtoZChalenge

Welcome to another day in the A to Z Challenge on autism. I can’t believe we’re halfway through the challenge already! Today, for the letter N, I will explaint he concept of neurodiversity.

Neurodiversity refers to the idea that autism, bipolar disorder and other neurological or mental disorders are not inherently pathological. Rather, they result from normal variations in the human genome and should be seen as natural ways of being and self-expression. The diversity of neurotypes need therefore be seen as similar to the diversity in gender expression, sexual orientation or ethnicity.

The neurodiversity movement rejects the idea that autism and other neurological conditions need to be cured, or even that they can be cured. It sees one’s neurological type as an essential part of one’s being, and therefore, changing someone’s neurotype will change their essence.

Some people within the neurodiversity movement say there is no such thing as a neurodiverse person. Rather, neurodiversity encompasses all people of all neurological types, including so-called neurotypcal people.

Neurodiversity activists see the spectrum of neurological expression as a sort of bell curve, whereby on the edges are people who are often seen as too impaired to accommodate. Yet these people might provide the cues to solving important problems or might be exceptionally able to contribute in a specific way. Some extremist neurodiversity advocates even see autistic people as somehow evolutionarily advanced.

Neurodiversity activists, for clarity’s sake, do advocate for supports for autistic and otherwise neuroatypical people. They embrace the social model of disability, which sees disability as originating from a lack of accommodation for people with impairments, rather than from the impairments themselves. Neurodiversity activsts advocate for inclusive education, independent living supports and occupational training which allows the autistic or otherwise neuroatypical person to remain as they are rather than conform to a majority view of “normal”.

A problem with neurodiversity and the osicla model of disability is that autism and other neurological disorders do impair people, whereas for example being gay or a person of color does not. They are often also the more capable autistic people who advocate for neurodiversity. This may lead some people to an exclusionist approach, whereby “high-functioning” autistics do not need a cure whereas “low-functioning” autistics do. I advocate looking at what symptoms are inherently impairing and what symptoms are not, rather than saying that certain people need a cure and others do not.