I wrote this piece over a week ago, but traveling, and then back to school rush, left me with no time or mental wherewithal to edit. So here it is, written as if I am still in New Mexico. I’m not, sadly. New Jersey seems very banal after the splendors of the southwest, but I have been consoling myself with glorious memories.
“Where Laths, Mountains and Temple Converged”
We have been having a respite week in New Mexico. It’s so beautiful here, but anyone who knows me well knows that I came here to see all the turquoise I could lay my eyes on. The thrill and honor of standing in the middle of a plaza, baking under relentless sun, and listening to the artists from the pueblos explain their work–it’s indescribably moving to me. There are usually few opportunities for common folk like me to meet designers, and everyone here is so humble. Jewelry is never just baubles. It carries the gifts of the earth, the artist’s vision and skill, the weight and heft of heritage, the living heart and hopes of the wearer too.
Our trip is wrapping up in Albuquerque, and yesterday, I was wandering through the lobby of our hotel, when I spotted a sign outside a conference hall that said “Autism and Aspergers Conference featuring Temple Grandin.”
I..there are no words.
How do we make a vacation decision and land up right in the same hotel as the great Dr Grandin herself? She of the “so willing to put her outspoken views out there and claim her place as an advocate” fame. Polarizing and polemical she may be, but I wasn’t going to miss the chance to listen to her speak. So while we were in the car, I registered for the conference on my phone, and spent that whole day squealing in anticipatory glee.
A) most of the crowd were from mountain states and also Texas, so I will confess to having some trouble understanding some people’s accents, including Dr Grandin’s. This was exacerbated by (mostly teacher attendees) whispering loudly in the audience. This is really getting effing annoying at all the conferences, and I wish people would have some attacks of conscience and cut that nonsense out. I am not as young as I used to be, and years of autism screams have dulled my hearing. On the bright side, no Alex and Ani clanking plague as there is on the east coast!
B) I stood in a long, snaking line to have a book signed by Dr Grandin, only to find that the few words I hoped to exchange with her (as others had a chance to) were denied me by the previous person in line hogging the spotlight. Please don’t do that, people. It’s rude to barge through life like a Cro-Magnon while expecting your victims to cultivate Buddhist detachment.
But: the truth is, Dr Grandin is not really a fan of present day moms from what I could perceive, so maybe she prefers not to engage with my ilk.
Which brings me to
C) the mom shaming in the keynote speech was so extensive that I was relieved to disconnect from Dr Grandin’s thought process and walk away. I don’t see much difference between the old school thinking that detached moms caused autism vs Dr Grandin’s judgment that overinvested moms cause poor adult outcomes. They are both predicated on the notion that we have all this Power. Please. For so many of us, this isn’t the only child we have, and we have a lot going on in our respective personal journeys too. More about this later.
The keynote speech was “Autism and My Path Through Life.” Dr Grandin began by being clear that her focus is on people like herself, who are more moderately on the spectrum. So she emphasized that with early intervention techniques, many things are possible, including speech. She also believes that social skills can be absorbed at an early age, so turn taking, good manners, and interacting through activities with people outside the family should be encouraged.
My favorite part of her talk was when she explained some of the ways in which sensory processing dysfunction are experienced. This is the stuff I cannot ask A, and that G doesn’t always want to elaborate on because it’s appalling to live with, so I get small glimpses but not a complete picture of what the distortions must be like, while also having to be cognizant of not overburdening anyone’s already strained resources.
According to Dr Grandin and some relevant sources she drew from, auditory processing is difficult because sounds can seem stretched out, and sometimes come across like a bad cell phone connection. All day long, hearing sounds that way, would drive me to the brink. Poor things! Dr Grandin gave an example of how, when people speak to her, she cannot hear the difference between ‘b’ and ‘v,’ and has to deduce it from context. Some of her recommendations are: to allow the person to initiate sound some of the time so it is less threatening; to allow them some control over stimulus exposure; to allow the use of headphones but not 100% of the time; and (this applies also to visual processing) to give the person time to shift their attention to something new. I can confirm that we do all these things with A, and they work.
With regard to visual processing, Dr Grandin described how visual images can look like a mosaic, just as they do during a migraine, or like pixels and even video interference. Words on a page can jiggle or vibrate. There are some telling signs of visual processing problems, such as when the person flicks their fingers near their eyes, or cannot catch a ball. Interestingly, eye exams usually turn out normal, so it is not a matter of vision problems.
Also interestingly, body boundary problems, i.e. trouble perceiving where your own body ends and where the rest of the world begins can be a symptom of severe sensory processing disorder. Since this is very pertinent to our situation, I perked up. I won’t elaborate on what we deal with because I’m not an expert, but just know that THIS IS SUCH A FEATURE OF OUR LIVES. 😉
Dr Grandin elaborated on Environmental Enrichment as a good treatment for these issues. For example, it is important to stimulate two senses simultaneously, and one of those senses should always be either smell or touch.
I was entertained by her word choices. They were brusque but effective. She talked about how autistic people often smell and touch things, mostly because the other senses (like sight and sound) are garbage. She went on to use the phrase Garbage Senses so many times that I had to stifle my laughter. I love that phrase and cannot stop thinking of it every time A demonstrates a sensory issue. It is a perfect descriptor, I tell you.
It is a wonder how Dr Grandin covered so many ideas. I cannot possibly sum them up, but she touched on her work (animal science), professions that are promising for autistic people depending on how they learn, how to interview and train for such jobs, how to develop friendships, what medications might be helpful for the intense fear autistic people feel that can often be paralyzing to carrying on with life, medical problems that can often be missed because autism behaviors make it difficult for us to decipher that there is something more going on, and ongoing sensory therapies that adult autistic people can engage in on their own in order to cope with panic attacks and overstimulation.
This is a person who has toughened herself up while also being willing to wear her diagnosis on her colorful sleeve. Who has developed academic rigor while also being horsy and outdoorsy. And who has created a coping system that allows her to stare unflinchingly into the fearful void of engagement with the world. I cannot even articulate how much respect I have for the self motivated, brutally driven and goal oriented force of nature that she is.
So in the end, I just wish she didn’t see so little worth in mothers. Her own mom is someone she speaks very highly of, but otherwise, she and the teachers in the audience were sharing anecdotes about how moms are a stumbling block to success, and how we need an identity apart from our kids.
I understand from personal, upfront experience how autistic people can catch hold of a way of thinking and then not be able to let it go. To unlearn a deeply held belief is a lot of work, and goes against the ruthlessly dogged progression of thought that I have seen in both my kids. And even if it’s controversial to say, I’m going to say it: I think this is what is happening in the ideas about mothering. There is no way for us moms to come out looking good when the thinking deck is already stacked against us, so I won’t go into any detailed attempts here. G and I have had conversations that are similarly labored, and only time and serendipitous events have ever resolved those tangles.
After the talk, I scurried back to our hotel room and made G come downstairs to meet Dr Grandin, who gave G a rousing lecture about making sure to have real jobs by age sixteen. G said in the usual laconic manner, “I guess it’s an honor to be scolded by Temple Grandin,” and we all laughingly agreed.
I am very glad I attended the talk, and also very glad that it allowed me to see for myself why Temple Grandin is considered a controversial figure. Her life’s work is nothing to sneeze at, and her words of experience cannot be ignored. To keep such a schedule and engage with so many new faces and places is incredible at her age. That she continues to be productive while also meta-engaging is really what autism minds are made for.