Parents, fishbowls, and sledgehammers

I attended and presented at the AANE Making Connections conference. The audience consisted of adults with AS, family of adults and children, and professionals.

The conference included a lot of interesting stuff. I attended a talk by neuroscientist John Gabrieli from MIT, who talked about some of what they've discovered about autism and the brain, what fMRI studied do and do not tell us about brain activation, and some results of specific studies. He talked briefly about one study that I participated in, but there haven't been enough participants to provide data. (If you are able to go to MIT to participate in fMRI studies, do it! You get paid and it's a couple of hours of work and sensory stress, but it's otherwise painless.)

I also participated on a panel called "Dating and Relationships". It was interesting participating. I shared my experiences. Another couple was also on the panel. It was a good experience. A lot of the questions from the audience were people asking specific advice about dating and issues for people with AS. Like how to approach dating, how to tell when someone isn't interested, or is interested, and how to make decisions regarding relationships. I am told I answered some of the questions well, so that was positive :)

I also chatted with a mom of a tween girl who was interested to hear about my experiences growing up. I have talked with parents before. In general they are anxious about how growing up will be for their daughter, and what the possibilities are. They want to hear about my experiences of university, and working, and relationships. I try to tell about both positives and challenges. About how I experience the world. My opinion that much of the challenge in autistic spectrum is at its root, about sensory processing.

My encounters with parents, in other words, have been generally positive. I think I can tell where they're coming from, their motivation to help their child, and wanting to hear from an adult who 'made it through' the child and adolescent and young adult phase. I think I present the "right mix" of hope and struggle, at least for parents of kids with the Aspergers label. Like, hey, my executive functioning is in the toilet, I have expressive/pragmatic language difficulties, experience overload, have an auditory processing disorder, and have rewarding relationships but am challenged by some aspects of that. I guess, though, I function in the world. More or less.

On the flipside, I also experienced a kind of "fishbowl" effect at the conference. Lunch tables had signs on them, which allowed people from different groups to connect -- families, professionals, adults with AS. I sat at one of the latter tables. At one point, a man and his sister came over to sit down, and she did not have AS. At first it seemed like not a problem but then she started asking questions of some of us. Maybe her brother doesn't live independently but she started asking one fellow questions and seemed very surprised that he lived on his own in an apartment. Then she started grilling another woman at the table. An acquaintance of mine took exception to this and said very assertively that she was uncomfortable with how this woman was acting at a table that is clearly labeled as being for adults on the spectrum, that her presence is being tolerated, but the way she's treating us isn't nice.

My non-confrontational-avoidant side kicked into full gear and I stayed silent. I saw my friend's point. It made me really uncomfortable. That, combined with people mulling around with their plate of food, figuring out where to sit and seeing the "Adults on the Spectrum" sign on our table and shooting looks at us that were discomforting. Actually my friend saw them more than I did, because I wasn't looking (in my usual obliviousness combined with already being overloaded).

In the buffet line, my friend and I were chatting about various things and some of the ladies in line (not spectrum) were giggling, I think because they found what we were saying funny. It was funny. This made me a bit proud; we tend to have a quirky, ironic sense of humour.

from withinmybox.com

But the fishbowl feeling was very striking; it's like we as adults with ASD were specimens, or objects of inquiry. It was like the joke about people with ASDs disappearing when they reach 18. We were suddenly there, in the faces of the people who think about kids with ASDs all day long, and used to encountering ASDs in children with a child (accented with the influence of ASD) understanding of the world. Here are full-grown adults. It's like they have no framework for us.

So I can somewhat understand the staring. My tendency is to want to reach out and make those looks an inquiry, understand them as a hesitation to ask, but coming from a desire to learn, rather than a derision, skepticism, or scorn. I want to provide a framework for adults where none exists.

Maybe I haven't experienced the lash of parental invalidation enough, the kind where they say you don't act like my son/daughter, you make eye contact, you don't seem ASD enough therefore you can't speak about it. (see this video for a great account of emotions, "passing", and invalidation) At least I haven't experienced the last part of that. I have gotten "I wouldn't have guessed you have Aspergers".

My mental response to that is, well, okay, fair enough, because you don't see all the coiled up tension and anxiety and confusion and the way my friendships and marriages stumble, the way my mind works, the messiness of my house, the potential of my mind contrasted with where I've actually been able to get to.


So I haven't felt the need to use the "sledgehammer" with parents or other NT people* who don't live with ASD as a first-person experience. But I can understand why some of my peers have to wield the sledgehammer.

Which leads, I suppose, to another potential topic: Why I Have Hesitated to Protest



*I am aware that not all people who identify as parents or professionals first, are NT.

Microflora and Neurology

Oh, I actually don't like "weighing in" on food conversations. I also don't like controversy. I know this is all ripe for debating. Regarding GFCF (Gluten-Free Casein-Free) and autism causation....

I'm not suggesting a causation. I am suggesting a connection. I am suggesting that if diet affects neurology then addressing dietary/digestive imbalances can have an effect on the neurological/sensory/inflammatory issues associated with autism. An effect. Not cure.

I hope the above is clear enough that instead of arguing that I'm somehow camped out on DAN blogs, I'm thinking about something that is only just starting to be recognized in the biomedical community, and integrated into various specialties, looking at the relationship to various conditions/diseases/states of being.

Anecdotally

I cannot eat dairy. I once found some amazing almond cheese. I ate LOADS of it. This resulted in bad diarrhea. Checked ingredients and discovered it had casein in it. Other foods with casein (the protein in milk) also affect me badly - cramps, pain, bad poops. Evil.

I have, despite cutting out dairy, major digestive problems. At the very least, abdominal pain and problems digesting and processing food makes it really really hard to focus on other things, because the pain is bad.

Another anecdote: When I was in the hospital and had to have surgery, I was put on fluids only. Y'know, the glucose bag. So. I had no food for days. I have outside verification that I was more clear-headed, communicative, coherent -- on narcotics, even -- than I usually am. I made some effort afterwards to avoid dairy, gluten and soy. It's hard, and I stopped. I still slip up on the dairy. Brain no workie. Stomach ouchie. Suffering. Yes, because of food. Not only because of food, but some because of food.

Now; if I had a healthy gut, I have no idea what I would be like. I do know that even if everything could be explained away by horrible stomach pain my entire life and the inability to connect to my peers because I was loaded up on dairy and other foods I couldn't digest, I would still be who I am if I healed my gut now. I developed in a certain way, and even if I change my neurology in the future I would still be who I am right now. Even if children get their guts in order through diet changes, I do not assume that all the problems go away. Understand that much.

And now, moving beyond anecdote...

Fact: Your brain is connected to your gut. You have nerves running to and from your organs and this is a part of your neurology.

Still really young, the study of gut microflora offers an interesting take on what diet might do for autism. But first take a step back from the label "autism". Take a step back even from notions of "disorder and syndrome" which are really interesting to pick apart (...there are no objective things in the DSM, no clear pictures, only sketches of checklists that provide a common and arguably useless language; ).

While this article deals with immunity and microflora (things like allergic response, which isn't far off topic from dietary issues), see what it has to say about how both innate and acquired immunity is related to other body systems:

Whatever influences, modifies, enhances or suppresses the immune response (at any stage or level) does not exist by itself, and is not going to have any effect unless it is harmonised, connected and influenced in two ways. One is by a number of other systems in the body, including first and foremost the central nervous system, which includes the mind. Second is the endocrine system, which creates and influences emotions.

So the nervous system, the nerves, indeed *neurology* is intertwined with immunity. This isn't, from what I'm reading, a one-way causality thing. Why should it be? Brain communicates with gut, gut communicates with brain. Signal and response. Gut affects nervous system??? Whoa.
Gut microflora is an acquired ecosystem, meaning, when we are born, we have no bacteria in our gut. Microflora consists of many many different bacteria. We actually contain these helpful bacteria in our gut, mouth, genitals, on our skin, really everywhere -- and the human body has more non-human DNA than human-DNA (isn't that fraakin' mindblowing?) :)

Total microbial cells found in association with humans may exceed the total number of cells making up the human body by a factor of ten-to-one.
-Wikipedia

So. What does this mean?

An Interpretation

The body's ability to deal with its environment, regulate the nervous system, emotions, sensory input, etc etc. is impacted by the balance of microflora in a person's gut (and other parts of the body). The more diverse the microflora, the better that ecosystem processes a variety of foods, and other potentially harmful and benign substances from the environment. If the ecosystem is less diverse, it may not be able to process some types of food.

The simplest and best known example is yogurt. (Active culture) Yogurt is basically dairy that has live cultures which have partially digested it. It contains the bacteria necessary to digest it (albeit, not necessarily in enough quantities for someone like me to handle it). A home remedy for yeast infections is yogurt. A big problem is also candida, the overgrowth of yeast in the system. We're supposed to have yeast, but if we have too much, the system is imbalanced. Anything we eat with sugar in it will promote the growth of yeast, for instance. Reducing sugar can 'starve' the yeast.

This doesn't just apply to yeast. If any kind of bacteria gets too prolific it can make it hard for some of the other useful bacteria to do its job. We have some kinds of bacteria that are ok in small quantities but not in larger quantities. Some bacteria we don't know much about. We don't know what they do. We can't even culture some of them.

So a lot is not even known about this field, and while there has been scarce study of any microflora link to autism, there is also microflora research and anecdotal mention in relation to obesity and diabetes, MS, Celiac...

It doesn't seem like it's nonsense to make a connection between neurology and acquired immunity (which is what microflora is).

Restricted diets because of sensory defensiveness could affect microflora balance. So could a lot of processed food which is primarily sugar, corn and soy. I've read anecdotes that when a child is removed from one of the "offending foods" like sugar, corn, dairy.. they will have what might be called an 'adverse reaction'. I think if I were a bacteria colony and had my main source of goodness taken away, I would scream bloody hell. Donna Williams writes of a backlash reaction (too fatigued to cite, go see Donna Williams' articles on food intolerances and addictions in autism and her own experiences). We are what we eat and we eat what we are.

That isn't asserting a causation. This is not autism=bacterial infection. Nor is it vaccine -> kills gut bacteria = autism.

What it is asserting, however, is that balancing out microflora can affect mood and cognition. Mood and cognition can affect gut. Stress can create intestinal problems. What we think can influence neurology. Intestinal problems affect neurology.

If I can potentially address sensory problems like sensitivities or disregulation by altering my diet (adding foods that promote healthy microflora or eliminating foods that cause pain or promote bacterial overgrowht), I'll try it :)

And that is very different that saying I think I'll cease being autistic if I stop eating dairy and high fructose corn syrup.

I actually must thank my husband for his understanding of neurology, psychology, nutrition, and prolific research into peer-reviewed sources. This cobbled together post doesn't do his thoughts justice.

(I reposted this from my contribution at Autism Women's Network in response to The Myth of GFCF Foods)

being dismissed

[there is profanity in this post. you have been notified.]

well. it's coming from more or less close people including family. dm sharing friends' comments about how a specialist in AS would OF COURSE diagnose AS. just like a psychiatrist would find something else, a naturopath would find candida, some other allopathic dr would find something else. that a more generalist would be better at identifying the "real" problem because they aren't looking for one particular thing. the thing they make money at treating.

bullfuckingshit.

a. the people i went to are aspergers specialists. they see many many people, kids and adults alike. they see THE DIVERSITY out there.
conversations i've actually had with doctors:
me: aspergers is being considered /ive been diagnosed with aspergers
dr: oh, ive worked with aspergers people before, you dont have aspergers. it's getting overdiagnosed. like ADHD
me: how many people with aspergers have you seen in your practice?
dr: a couple of patients
me: how old were they?
dr: they were kids
me: what gender were they?
dr: male

b. if the specialists -- who are publishing studies, developing diagnostic tools, releasing a book this year, advising organizations about autistic spectrum issues, and even more specifically doing this work regarding adults, and they care one iota about their reputations, why would they overdiagnose?? why would they want to invalidate their livelihood? they aren't fucking tarot card readers telling everyone who walks through their doors that they have incredibly special energy that connects them to the universal vibrations in a powerful way.

c. the preconceptions and stereotypes are so rampant in the general medical community, many people with aspergers or other subtle enough neuro issues are being ignored, actively dismissed, and untreated, left to suffer. 'hey doc, i have trouble hearing and am really sensitive to sounds. english often doesn't sound like english. i can't really have conversations in groups of more than one other person. im considering some kind of auditory processing problem' ... 'no, well auditory processing disorder is a developmental condition'

 FUCK YOU!!!!!! 

d. the general public. holy crap, autistic people are popping up EVERYWHERE! this is excessive. you are normal, why are you doing this? to quote another pdoc: 'you just want this [diagnosis] as an excuse to not have to change' (translation: accept that you're borderline - that is why you want this excuse)..

it's dismissed as hypochondraism, it's sort of the old "not autistic enough" problem (see http://ballastexiste...tics.org/?p=579). what are you, inside my body? did you follow me around when i was a kid? do you even know how i was bullied? do you see my stimming in private? am i not autistic enough because i can control my stimming most of the time in public?

"more functional" people water down the condition, so if people think aspergers is "me" then their more "severely" aspie/autie kid won't be understood. their difficulties are somehow invalidated? maleungulatedung.

and of course, aspergers/autism stops when you reach 18. and new issues dont come up as a person ages. and getting diagnosed as an adult is BS. and making eye contact rules out a diagnosis. being able to interact with less awkwardness in very specific interactions rules out a diagnosis. having any NT skills, which, as an undiagnosed person growing up i had to learn, ON MY OWN, and only partially succeed.. well that rules it out too. you can't have adapted at all, since neurological conditions are permanent and unchanging. and being able to do something, but sometimes not being able to do it is just deliberate 'performance'.

and you can't be. because you have empathy.

maybe my family will never accept it because it touches a nerve (um, maybe they have aspergers?)
i dont know exactly. i just know that the more i talk to aspies the more i see myself in how they describe their experience (this happened first on CB), and talking to these professionals, when i talk about my issues, they are incredibly validating about that. they GET my social difficulties, sensory problems, etc - my own unique constellation of things.

i could go on.