more

*

Screen shot 2013-04-30 at 5.29.35 AM

Diary’s Facebook status – yesterday

~

There are studies on what I’m about to write. Lots of them. There are scores of posts out there on the topic, undoubtedly far better written than this one. Certainly they are better referenced and include links to, ya know, sciency stuff — studies and the like.

I’ll do my best to include some of that later, but I’m not writing as a scientist, or a doctor, or even a journalist. I’m writing as a mom. A mom who has begun to understand that, in the case of my daughter, there’s a fatal flaw in the autism zeitgeist. And it’s been getting me, and I dare say a lot of parents, into trouble.

It took a while for me to recognize that there is often a significant disconnect between what I think I see and what Brooke is actually experiencing. I tend to refer to it as viewing her behavior from the outside in rather than empathizing with her experience from the inside out.

For example – if I can’t ‘reach’ Brooke – if she’s not apparently ‘responsive’ when I call her (in the way that I, based on a combination of my neurology and 42 years of social conditioning, assume that one would respond when called), when she doesn’t ‘react’ to outside stimuli (in a way that I, as a neurotypical person, recognize as a ‘reaction’), it might seem reasonable to conclude that she is unaware of what’s happening around her.

Not so much.

I can say with some confidence that in nearly every incidence of Brooke’s withdrawal, her ‘lack of recognizable reactions’, as it were, is based not on a lack of engagement, but on an overabundance of it. This is where it gets tricky. Bear with me though, cause it’s also where it gets really, really important.

I recently read Judy Endow’s post, “He Is In His Own World” … Is It True? and immediately recognized my girl in her words.

As an autistic I would like to encourage all the people who think and say autistics are in their own world to reconsider. Please know, that contrary to popular belief, autistics are not in their own world.

The fact is that we all share the same world. My experience of our shared world is much more intense than yours seems to be. My sensory system is often overwhelmed by the amount and intensity of sensory information it takes in.

In addition, I feel your emotions more intensely than I can tolerate. Many times I cannot look you in the eye as I get too much emotional information when I do this. Sometimes it is painful. It shuts down my system.

I nodded so hard as I read those words, my head nearly flew off my neck. Before I’d even finished the post, I’d linked to it on Facebook with the words, “THIS. THIS is my kid.”

I’ve talked at length about the fact that Brooke has made it very, very clear that she does not lack emotional empathy. She has made it equally clear that she does she doesn’t lack environmental awareness, despite the arguable periodic evidence to the contrary. Rather, she experiences a dramatic surfeit of both. And often, hyper-focusing on one particular thing to the apparent exclusion of everything else or giving the appearance of tuning out entirely are the only life rafts that can save her from drowning in the roiling ocean of sensory overload.

To look at her in those moments, the ones in which she’s playing defense in a world that’s grown far too intense for her to process, it may very well appear that she’s not present or not engaged. Please note the italics; there’s good reason for them. Throughout her early childhood, I wrote about the moments in which I’d lost her to Brooke-land, in which she’d become unreachable, the times I thought that we were no longer connecting.

The things that I tried to do in my misguided attempts to bring her back to me in those moments — the times I went chasing her eyes as though I were on some valiant mission to save her from oblivion — they break my heart to remember now.

Because … THIS ..

I feel your emotions more intensely than I can tolerate. Many times I cannot look you in the eye as I get too much emotional information when I do this. Sometimes it is painful. It shuts down my system.

THAT is my child.

I see it every day, now that I know where to look. I see her taking it all in, the searing emotion, the too big, too much, too bright, too bold, too loud — the raw, intense, jagged-edged noise of the world — with no hierarchy, no categorization, no filter — just noise, all at once from every angle. And I watch her body try to hold it all until the mere fifty-one pounds of her ten-year-old being simply can’t contain it anymore and it’s threatening, threatening, threatening to boil over and spill up and out, the burning liquid anxiety now scalding her skin, the toxic steam of fear choking her breath and taking her words and pushing her further and further to the limit until she simply has to find a way, any way, to say, ” No more.”

And in that moment, that moment when the input is boiling over and it’s just too much, trying to force interaction is tossing gasoline onto an already raging internal fire.

It’s giving her, no, it’s forcing upon her, the exact opposite of what she needs.

She is not unengaged with her world. She’s seeking refuge from being painfully over-engaged.

These realizations are hard. Facing them head on sucks. They come steeped in guilt and marinated in feelings of inadequacy. But, well, parenting is hard. Any and every kind of parenting. And parenting a child whose experience of the world is radically different from our own requires a whole different kind of work.

There are no instructions. There’s no manual. And a lot of what we think we know is not only useless, but destructive. Whether we realize it or not, we interpret our children’s behavior (and, if we believe that behavior is communication, then by extension we interpret what we believe they are trying to tell us) through the filter of our neurotypical bias. If we’re really going to effectively and respectfully parent kids who are not neurotypical, then it stands to reason that we’ve got to cut that out.

How? Well, I’d argue that a good place to start is recognizing that unresponsive may very well mean overly responsive and overwhelmed and that nonreactive may well mean reacting internally.

Because if there’s one thing that I’ve learned over time, it’s that it’s flat out wrong to assume that because I don’t relate to the way in which my child is interacting with her world, she’s not. Not only is the assumption wrong, it’s the opposite of right. The opposite of truth. Of her truth — that she is not just different, not just ‘not less’, but sometimes, often, she is more.

**

photo-45

*

As promised, some links for further reading / viewing. Please feel free to add more in the comments.

Amanda Baggs In My Language

Judy Endow “He Is In His Own World” … Is It True?

Rachel Cohen-Rottenberg On The Matter Of Empathy

Nicole Nicholson Glass and Concrete

The Intense World Syndrome – An Alternate Hypothesis For Autism

24 thoughts on “more

  1. Oh, Jess. I was picturing my Isabella whilst reading this. I do believe she gets distracted but wonder when is what you are describing and what is distractedness? I know that I can go into my own world (a trick abused children develop) when overwhelmed. How to know the difference between escape and processing? Hope I am not too confusing. I am processing as I type. You do make me think.

    • Processing is a delay – mine is about five minutes on a good day (people hardly ever give me the chance to express my thoughts because, within that five minutes, the conversation has moved on).

      The distractedness – being overwhelmed to the point of nuclear meltdown – is not a delay. It may be protracted in its length, with that glassy eyed look of being in another place, until decompression – getting away from everything – can occur. Parents of autistics often have a sixth sense about when this is occurring. For me, I often become silent, talk in a monotone voice, and withdraw. If it becomes too much, I run away from the source because I really dislike people seeing me meltdown. It’s ugly and raw and impulsive actions until I can decompress and find my center again.

      I am hoping that makes sense.

  2. You completely, totally, nailed it. THIS is my kid.

    A while back, you and I exchanged notes in your comments section about mainstream inclusion and when to know that a change is needed. I saw in my son that he was not disengaged in his mainstream class, but overwhelmed. “Far away”, is what I call it, probably inappropriately but an easy way to explain to the school what I was seeing. Overwhelmed in a way that I as an NT will never truly understand, but I can still recognize it (or try to) and help him. He was “seeking refuge from being painfully over-engaged”, as you so perfectly put it.

    2 weeks ago we switched to the community classroom (with “HF” kids — ugh, more on that another time).

    Now? He is calm. He is able to engage *externally* bc he is no longer a volcano *internally*. He says to me, regularly, “I like Miss O’Neill’s class. It’s *quiet*.”

    This is my number one job as his mom. Not to make sure the teachers get him to learn to read at Level 23, but to recognize that he is always communicating, just not the way others might expect. And it is pretty friggin’ meaningful and critically important information that he is conveying.

    Thank you. Will be sharing.

    • Replying to my own comment here, ha!

      I wanted to add that when he was in the mainstream classroom, he was never able to say with words, “It’s too loud. I can’t handle it. It’s too much.” But boy oh boy, was he saying it loud and clear with his actions, when I slowed down and paid attention.

      It goes back to what we all know, that behaviour IS communicating. Always. Instead of teaching these kids our NT language, we need to work on learning THEIRS. To me, THAT is respect.

  3. i’m a big mess after reading this. the desire to understand: it’s so much more important than merely understanding…it’s a very loving thing to have that desire, and it creates breathing room for the focus of that desire. and breathing room…room to just be and breathe…makes all the difference. it’s a loving thing, and it’s just very moving to read these insights, even though i know they carry so much pain with them. don’t worry about the past…think about it, learn from it, but you don’t have to balance any scales…you’ve already overbalanced them with love, compassion.

  4. You have just made a community join you in a “yes, yes, yes,” moment!! Perfectly stated!! On your FB post yesterday about someone feeling surprised that Brooke was better at skating than she was…. Ugh!! I had to have a conversation with a neighborhood friend who said to me that she was “surprised that Joey was doing so great in school, you know, considering he is autistic”….. After I quelled a brimming need to scream…. I channeled you in my conversation, knowing that if I could just educate her on Autism, even if its only my living version of it, that I could make a difference!! I hope I did!! Thanks again for all you do…..INSPIRING!!

  5. Personally, I think that autism and ADHD are two branches on the same base tree. In both cases, there is way too much sensory input getting in. NT’s are able to filter out extraneous information – we do it all the time. Imagine if you could NOT filter out the sound of the fluorescent light ballast, the scritching of pens on paper, the breathing of those around you, the perfume and sweat and polish, the feel of every piece of clothing and tag you had on…
    In the case of autism, the person actually is able to put in place a filter to protect themselves – the ‘problem’ is that the filter is *too* good. In the case of ADHD, the person is not able to filter – hence the flitting from one thing to the next and inability to stay focused. The hyper-focus that ADHD kids are capable of for activities that really interest them is the way they *have* learned to filter out the rest, by attending to just one thing. (And does that look so different from a child with autism staring at a wheel spinning?)

    • I am autistic, ADHD, sensory processing disorder, anxiety issues, and auditory processing disorder. I have NO filters. It is very rare when I can sit still and focus. I have come to the conclusion that this is where the frustration-derived anger comes from. No one truly understands my world, and often attribute my reactions as over reacting or being too sensitive. My filters are just wonky. I don’t have just have one obsession, I have a hundred. Most ofvthe time, my mind literally feels like its going to implode.

  6. I teared up when I read this because I think I just “got it,” even though I always kind of got it. My son plays baseball, and he is very good at it. However, when the team loses – even if he had a great game himself – he completely loses it. He cries, and he can’t handle even shaking hands with other team. He is ten now, and a big ten, and crying at the end of a baseball game often makes for quite a scene. I’ve been trying to teach him that it’s okay to cry, but it would be better if he waits until we get to the car. He told me Saturday (after a huge melt down because of a loss at a scrimmage) that he can’t help it. He told me the feeling are just too big, and the tears just come out. It broke my heart – but reading your very timely post today helped so much. Just so you know – I have some of your posts taped to my refrigerator. I have felt alone in this for a long time, and your blog helps me feel less so. Thank you.

  7. This is a revelation. Once I understood this concept, I have been better able to give my daughter the space she needs and truly the respect she deserves.

    And if society could reframe – not less but more- or not less but not like yourself- and, as we’ve learned with people of different colors, different beliefs, and lifestyles–it only makes our experience as a community richer. Not less. More to learn. More to grow. More to see.

    Yes, yes, yes.

  8. I’m picturing my Silly while I read this. He is the one that I most worry about “where he is” and in that search have probably overlooked so much.

  9. I needed this post today. The 8th graders at my daughter’s middle school are leaving today for their Washington DC trip. She’s not going. My heart broke as I watched parents escorting their children to the gym, carrying their children’s luggage. The experience will be amazing I’m sure. I was prepared for to her go. There was talk of me going with her for support. The school said no parents were allowed to attend. No exceptions. An aide offered to go with her. But alas L’s severe anxiety and need to maintain her routine is preventing her from going. I watched her as she watched her peers from her special education classroom. She seemed ok ,smiling and saying hello to everyone as she always does. I wondered if she was sad, disappointed about not going. She appears fine. I’m sad. I hate that her anxiety prevents her from being able to participate.

  10. I so wish I had your gift in putting what you feel into words! This just tells me that I’m on the right path with my girl. I have been feeling that I’m not doing enough in helping her reach what she feels is her gift. Her passion! I really am helping her be her,not anyone else! Now I have to make sure that everyone around her sees that too! Thank you.

  11. It took me a while to figure this out as well, but now, I know my guy needs that down time. The time to fixate on one thing seemingly out in space, disconnected in order to calm the tormented seas. I know he’ll come back to me. He just needs that time. And, really, don’t we all need that at one time or another?

  12. Your timing couldn’t be better, considering that my son’s teacher called as I was reading it to tell me that H just wasn’t himself today. I’m trying to discover if it is a medication issue (did hubby forget to give it this morning), but in the meantime I can’t help but also wonder if it is just a “too much” kind of day. Do I go and rescue him from the assembly they are about to have? Is the anticipation of the assembly–and all of the intense sounds and emotions of it–what is causing his behavior? If I “rescue” him, will he be distraught that he missed something so exciting…even if it is also so overwhelming? Sometimes it seems there is no right answer.

  13. Thank you…that’s all I can say other than I plan to print this post and show it to the ones who don’t get what I’m going thru as a mom of an autistic child. My son was just diagnosed in Feb at the age of 13 with PDD His dad and I have had a really hard time for years trying to get through to our son and trying to understand why he was different from his 7 siblings and now it is finally starting to make sense. And I cry and laugh because if it makes sense to me then I can hopefully make it make sense to others in both of our lives. But because it has taken this long to figure this all out I am just beginning my journey in getting my son the right kind of help with life, learning, and everything else. One of my biggest stigmas we are facing is that because our son was not diagnosed by the age of 3, people say it can’t possibly be autism. But I have fought that battle before too with him (not looking like anything was wrong) He was born with one heart condition, diagnosed with seizures at 20 mo and diagnosed with another heart condition at age 4. So while we were trying to save his life all the other stuff went unnoticed. Well now that his medical issues are under control we were hit with this so in my research I stumbled across your FB page (I believe it was the Xanax post lol) and I just want to say it is one of the highlights of my day to read your thoughts especially when it has been a very trying day. So thank you for your wisdom, your experience, but mostly for your humor.

  14. This post hit home for me. I keep trying to explain to others what it’s like to shut down but no one really seems to get it. I see it in my kids and I see it in myself. When it’s all just too much, we close off. I have found myself shutting down a lot lately because of so much on my plate to deal with this month.

    I’m sharing this post far and wide. 🙂

  15. I am printing this and taking it to my son’s IEP meeting. We will not begin until everyone reads it. *nods once emphatically*

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s