My friend Kristine sent me this yesterday, from the Autism Discussion Page on Facebook. First, there was this rather impressive slide show:

autism 101 autism 102 autism 103 autism 104 autism 105 autism 106 autism 107 autism 108 autism 109 autism 110 autism 111 autism 112 autism 113 autism 114

…then there was the following person’s reaction to it. I do read from other adults on the spectrum, but I have to say this perspective was unusual, and thought-provoking.

Sorry it took me so long to go about writing this, but it took me a while to process and word my response. I wanted to make sure I took the time to really think on it. I may have also Ben a bit nervous about how people may respond to this. I want to thank you for letting me share this.

Your slide show on verbal vs. sensory thinking in my opinion is very well done. I really like how it broke down the differences between verbal and sensory thinking and puts it into simple terms so most people can understand it.

I also really liked how you used the differences in thinking to explain many of the symptoms of autism. That was very well done!!! I especially loved the example with perfume! So few people realize how traumatizing a sensory experience can be especially when it is something they don’t notice at all!

I really loved this slide show. I feel it match very closely to my own personal experiences. Below I have written off of my experience of going from being nonverbal to verbal.

I had a moderate speech delay when I was little in spite of the fact I received early intervention since the age of 8 months old. When I was little my predominant method of thinking was sensory based. This was also the major source of my memories. I used to use people’s sent, sound of voice and hair to recognize them as I couldn’t recognize faces. The truth is I still use these features to identify people. However all my thoughts as a child were based in sense and experiences. While reading your slides one memory in particular came to mind and that was the first time I saw those huge round light bulbs they used to put around mirrors in salons as well as some stores. It fascinated me! It was bright and it smelt different then the lights we had at home. Curious I reached out and touched it with my fingers. And I remember the feel of the burn on my fingers and a sensation that went from the tip of my fingers up my arm and to my tongue. I know it sounds strange but it kind of had a taste or feeling in my tongue. In fact many types of injuries have feelings or tastes in my tongue or a smell like feeling in my nose. It isn’t exactly a literal smell but a sensation that is smell like? I’m not really sure how to explain it. I used my senses to understand and navigate the world. I used them to have an idea on the time of day and where I was. I know it sounds crazy but I remember being able to pause what I was doing and focus and have an idea of the time of the day. A lot of my memories are based on the look, feel, smell and sensation of objects.

Growing up I received a lot of therapies and slowly I went from having very minimal communication skills to being highly verbal. I think the peek hit around 14 or so. For me sensory thinking and verbalization/verbal understanding had two separate compartments in my brain. The verbal compartment seems to have been linked to the auditory compartment. As a child the more I used words the less aware I became of my sensory and environment. In fact over time I became kind of “detached.” My brain can’t seem to juggle understanding the world for what it is and using verbal communication at the same time. Temple (Grandin) once explained that with autism we don’t have enough wiring to support all the parts of our brain and I do feel this is very true. When I had little to no speech all of the wires in my brain were linked to my sensory thinking. With therapy more and more wires were moved to verbal thinking and processing. Slowly, overtime I began to lose a lot of my sensory thinking and it was being replaced with verbal thinking. However unlike sensory thinking it does not feel natural and I think for me it manifest differently than for those who are natural verbal thinkers . My process seems a lot more jumbled.

This is the best way I can demonstrate it below.

Sensory sensation -> sensory sorting *processing* -> understanding (now more it is more like partial understanding) *This is we’re it would end as a child before much of the speech therapy*- > search for and match with previously spoken sentences/scripts -> dissection and mixing of scripts to match thought or experience -> raw mental verbal translation -> apply scripted additives for sentence structure–> Adding pre translated phrases and scripts from past experiences-> Transition of verbalized translation of thought/experience from brain to body (this step might best be understood by imagining the verbalized translation sliding from the brain down nerves or something to the back of the mouth) -> coordinating verbalized thought into physical movement of tongue and mouth -> Physical verbal communication.

This is kind of a raw idea of how communicating works in my brain but there are more complicated aspects I can’t word. This very draining process can take anywhere from a minute or two to days, weeks or years depending on what I’m communicating. It is almost as though my original sensory thinking had many extra tedious and draining steps added to it. This processing is kind of like a big puzzle in my brain. In a general back and forth conversation this takes a few minutes as I am often sifting and rearranging our scripted translation. However this takes a lot from me to do and I will often become nearly completely unaware of my environment, as my body focuses all its mental processes to this one task. This also makes conversation very difficult for me as I have to constantly do this. Often I don’t know what to say to keep a conversation going and after we have run out of things I can quickly script or run into something I have not yet scripted or need to process the conversation falls short. Keeping the topic on my interest makes it much easier to communicate and to keep my attention. In conversations. After all I have plenty of pre scripted information to exchange in conversation.

It used to be I would only have to go through this processing while having a conversation or when in class if I wanted to participate, however slowly over time and the more I was expected to communicate verbally the more this process began to take over. As though my brain is constantly in this exhausting process to prepare itself for surprise conversations. As I said this is a very stressful and tiring process for me and can even be painful. Constantly having to do this makes the world feel dead to me. And in-spite of the fact that my brain is almost always stuck in this loop there is still so much I will never be able to communicate, so much that remains trapped inside of me. Even if it has been translated I can’t seem to get the translated signal to travel to the next step.

Honestly it feels like I traded the frustration of being non verbal, not being able to find the words and not really being able to communicate, for a very stressful and draining and frustrating process, depression. And still struggling to communicate but having the demands and expectations that I communicate verbally in-spite of how stressful, tiring and frustrating it tends to be.

While a large amount of my sensory processing has been taken from me I still need a lot of sensory input when thinking and translating. Especially if my brain is trying to formulate complex concepts or process big events. Sometimes my brain will start this translating process while I’m walking. This has lead to me losing track of where I am and finding myself in a sort of wandering state.

Even though I have lost much of my sensory understanding my senses are still heightened and I can easily become overwhelmed and overloaded. I think for me this process is almost like a sense in that I become overwhelmed and overloaded a lot easier during it. Some days I would do anything to make it stop because of how tiring, draining and stressful it can be.

However there are times where I can stop this cycle and turn it off. When this happens I am non verbal but in a good way, a way that is not caused by stress, overstimulation or anxiety. During these times I feel much happier and for a while things feel right again. This last year I have undergone two surgeries both times left me non verbal for about a week or so. During that time I discovered a few things. One I was a lot happier during the time I couldn’t speak as I didn’t have to start that cycle up as I used AAC apps to communicate. Two, I communicate a lot better typing and using these apps then I can talk. Three, I feel higher functioning and can manage conversations and social interactions better with my apps.

For me becoming verbal took a lot of hard work but has also become something of a burden. It is something that came with new and unexpected challenges. There is a part of me that wishes to give up speaking and just use my apps but this is something I know many would never support and would think poorly of me for it. I know there are many who are non verbal that would love to have my ability to speak, I know many parents who read this would give anything to have their kids be able to speak. I honestly often wish I could give this to someone else who could appreciate it more. But I can’t and so I’m left trying to figure out what to do next.

I wrote something explaining the negative effects becoming verbal has had on me. If you would be interested in reading it let me know. I can’t thank you enough for letting me share this with you. I love your page so much. I honestly believe this specific slide show should be given to every parent when their child receives a diagnosis!

So many autistic people are asked to explain how their brain works! Us “neuro-typical” types rarely get asked that, and I doubt we could articulate it – half this well – if we had to.

As with so much else in my child’s life, reading this extraordinary essay leads me to a cognitive dissonance…on the one hand, if I could fast forward to a time when Dar might be able to express himself 1/8th this well, I do believe I would fall to my knees crying with some kind of celestial gratitude. On the other hand, this essay makes me wonder if everything we’re doing to get there is wrong. Who knows. But I’m feeling at least a bit of cosmic gratitude to this author for their perspective. Thanks.

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