Monday, 14 November 2011

Is There Anybody There?

This is how I spend my time.

Today, at work, I sat in a shuttered meeting room in front of a neat line of empty chairs and a tripod-shaped phone that squatted on a polished table like a robotic claw. I took off my watch and regarded it, aware of my empty desk elsewhere in the building, an abandoned chair and an impatient flashing cursor at the top of a blank screen. I decided I had ten minutes to complete the task I had set myself before what could pass for a wee-and-a-cup-of-tea break started to look like a more suspicious dereliction of duties.

On the table in front of me there was another report bearing my daughter's name and the stamp of the local borough and a long list of names of those who had been sent copies. The report was seven pages long and it said that on top of the recommendations of the last two reports (to whit: assess my daughter for dyscalculia; call in the local authority's anti-bullying sub group; provide a safe room to which she can go when she needs to; give her extra time for tasks but keep subjects to a 15-minute limit; review class social dynamics and underscore positive peer reactions to her) we should also now refer her to occupational therapy to look at sensory issues and how they might be affecting her work and behaviour. The woman who wrote the report suggested that certain hypersensitivity to touch and noise was at play in Grace's underperformance and disruptive behaviour, and also some hyposensitivity. I didn't know what that meant.

On another page, the assessor had written: "There may also be issues with her vestibular and prioprioceptive senses."

I didn't know what that meant, either.

I scanned the front page of the report again. The author's name was written there, and her title. There was no contact number, no address. I rifled quickly through the pages again. There was no contact number anywhere.

So I started by telephoning the council switchboard (using my personal mobile phone, not the claw) and asked to speak to the author of the report.

"We haven't got anyone of that name listed."

"She's written a report about my daughter -- "

" -- Putting you through to Childrens' Services."

A pause.

"Hello, Childrens' Services."

"Hello, I'd like to speak to (name)."

"I don't know her. Hold on, I'll look her up."

"I think she's on the advisory team."

Pause.

"I've found a number for her -- here it is --"

"Could you put me through please?"

"Could I? Oh. (Doubtful) Er. Hang on."

Pause. Click.

New voice: "Hello?"

"Hello, are you (name)? I've got your report about my daughter."

"No, I'm sorry, I'm not her."

"Ah. I was put through to you by Childrens' Services."

"Sorry. What's the name of the person you want? I'll look her up."

"(name)"

"Here she is. Ah, no, that's my number. They've put my number here. That's why you can't find her."

"Right. She works for the advisory team. Do you know that number?"

"I can look up someone else on that team. Perhaps they can help. Maybe she's left or something."

"Ah. Ok. Thanks."

Pause. Click.

New voice: "Hello?"

"Hello, I'm looking for (name)."

"Hang on."

Muffled discussion in the background. I heard the name of the woman I was seeking being said by several voices in varying questioning tones. Then one exclaimed: "Oh!" and pronounced the name in recognition. My shoulders sagged with relief.

The voice came back to the phone: "She's not based here. I'll have a look on the system."

I waited in silence, the minutes passing.

"Are you there? She's at (this) school. Call this number."

I hung up. Eight minutes had passed. I redialled.

New voice: "Hello?"

"Hello? I'm looking for (name). She's written a report about my daughter but I can't seem to find her."

"Can't you? Awww. She's here. Hang on."

I waited in silence and as I waited I thought of Grace's face looking out of the car window in profile against the peachy dusk as we drove home last night. I thought of her saying blankly, still gazing out, apropros of nothing: "I don't deserve my friends Mummy. Because I get all cross and I lose my temper at them and shout. And they're just nice."

When the new voice came on and said: "Hello?" I breathed in and forced a friendly, all-the-time-in-the-world, polite tone into my voice and said:

"Hello? (name)? I've got your report about my daughter and I wondered whether you might have a few minutes for a chat. I've got some questions, you see."

The next report is due in my email inbox tomorrow.

8 comments:

  1. Beautifully written. Good luck tomorrow

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  2. Thank you very much.

    A lovely friend, who works with pupils who have an ASD, kindly wrote to me to explain the following, which I include here for others who might have been wondering:

    "Vestibular is to do with balance e.g. getting confused and agitated on an escalator. Proprioceptive is to do with the sense of where your body is in space e.g. not knowing which way to go if you're heading towards someone in the street. If you're hypersensitive in a particular area/s, you avoid those sensations and tend to have adverse reactions when you encounter them. If you're hyposensitive you have reduced sensations in a particular area/s, so might seek out these experiences in a non-typical manner to compensate e.g. sniffing or licking things excessively. I did some research recently with KS2 pupils with high functioning autism and Aspergers and every participant identified hypersensitivity, largely in relation to noise, smell and touch as having a negative impact on their school experience."

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  3. Hi Sophie,

    I am a 33-year old aspie girl and I really like your blog. I sometimes cry when I read it. I think I have already fallen in love with you and Grace.

    You didn't quite get the definitions right. Vestibular is body relative to planet earth (the tilting sense). Proprioceptive is body parts relative to each other (how you know where your hand is when it's behind your back).

    I've got lots more information on my website, www.aspiedebi.com - please have a look, because I think it will be helpful. It sounds to me like Grace needs a pair of coloured glasses. You could e-mail me through my website if you like.

    Debi

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  4. Hello Debi,

    Thank you for your lovely comments. I'm glad you like my blog, though I feel bad that it makes you cry sometimes! I'm going to go and read your website now to find out more that might be useful for Grace.

    Take care

    Sophie

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  5. Hi Sophie,

    No feeling bad! I don't cry because I'm sad, I cry because of how lovely you are with Grace and Betty and how you cuddle them and are so caring - it's really beautiful. E.g. I really liked your letter that you put in Grace's bag when she went away on that school trip, and I love the background picture of you and Grace kissing. What you have is a real skill that not all mothers do have and it makes me really emotional.

    Enjoy the website - I'll give you my phone number if you e-mail me and I can probably explain anything more than you might need to know, e.g. about the hyper- and the hypo-sensitivity stuff.

    Debi

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  6. Hi Sophie,

    I just looked at my website, and realise it doesn’t explain exactly what the vestibular and propriosensory are, so I’ll give it a go here.

    Vestibular = the tilting sense = how you know if you are tilted or upside down. This is the sense that tells you if you are upside down on a rollercoaster, and it tells me when to kick out of my front somersault in trampolining. I experience it as a feeling in my stomach.

    Hyper-sensitivity means over-sensitive. So, people who are hyper-sensitive to vestibular motion will hate roller-coasters and might get travel sick in general. They might really hate stairs and heights.

    Hypo-sensitivity means under-sensitive. So, people who are hypo-sensitive to vestibular motion (e.g. me!) will absolutely crave somersaults, trampolining, ice-skating, bike-riding, jumping around, anything with that tilting motion. I think of it like I have to be upside down and twirling around a certain amount to feel “normal”. I need MORE of this stuff than the average person to feel okay.

    So, depending on whether a person is hyper- or hypo-to vestibular motion, they will appear very different but there is a common root.

    Propriosensory = the body sense. Where is my left foot just now – it’s under my desk, so I cannot see it, hear it, smell it, taste or touch it, but I do have an idea where it is in relation to the rest of my body. That’s the propriosensory system telling me that.

    Hyper-sensitivity in the propriosensory world means being extra aware. My Alexander teacher slightly moved two fingers of my hand apart very gently and, when I became aware of this, I described it as “whoah, you’re splitting up my hand” or something very dramatic like that.

    Hypo-sensitivity in the propriosensory realm means not being very aware of where your body parts are. In extreme cases (not me and probably not Grace either), people literally have NO knowledge of where their left foot is unless then can see it, and no clue where there arm is if it’s behind their back. They need their visual system in order to be able to walk. In my case, I’m generally spending so much time on the thinking channel, that I don’t receive a lot of body information in general and I’m therefore unaware that I’m slouching around and that my shoulders are all over the place. I also cannot really visualise my body as one piece- it’s more a connection of bits. Whichever bit my attention is on, I’m hyper-sensitive to, whilst completely ignoring all the rest, to which I’m hypo-sensitive. Things like leotards help me be more aware of where my body is because of their constant pressure.
    In the same way, the other 5 senses can all be hyper- or hypo-sensitive. I probably can’t write about them all here, but let’s do the ones that are in Grace’s report.

    Hyper-sensitivity to touch means being extra sensitive to touch. Things like labels in clothing could be a problem and certain fabrics. A light touch on the arm might be unpleasant but perhaps a firm touch is nice (ask Grace if this is true for her). So, if someone accidentally brushes past Grace, she might find that really, really painful and might react angrily to that, especially if she doesn’t realise that it was an accident. Like if someone suddenly shouted in your ear – that’s probably the equivalent for non-autistic people.

    Personally, I’m more on the hypo-sensitive to touch side of things and what I need is “buff” headbands (firm pressure around the head), lycra clothing, firm hugs (and lots of them). Like the other senses, people are often a bit hyper and hypo on the same sense.

    cont.....

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  7. ....cont (This is part 2 because I used too many characters).

    I think probably all of us are
    hyper-sensitive (extra-sensitive) to noise. I think part of this is being so absorbed in what we are doing, (monoprocessing on another sense) that it is really a great shock when a noise starts up. I might jump in the office if someone comes up behind me – I’ve not noticed them approach at all because I’m thinking about my work. Some people who are very hyper-sensitive have amazing hearing, e.g. being able to hear a whispered conversation upstairs when they are downstairs. My friend needs ear plugs to walk down the street. I’m only a little hyper-sensitive to noise, but I can tell that I am more sensitive than the non-autistic population, and loud noises really tense up my body in a way that doesn’t happen to other people.

    Crowds have an additional complication that there is just too much of everything. Too much visual to process too quickly in the train station where 200 people are going in 200 different paths. Too many noises, too many smells, people brush past you in the crowd (touch issues) – it’s major overload time, and this all causes arousal in the brain and you are already pre-stressed at 8 out of 10 before anything actually bad has happened to you. The stress just due to the environment has already tensed up your muscles.

    Coloured glasses can help all these problems because they filter out a lot of visual information (which is 70% of the brain’s overall workload) and therefore reduce the total information coming in to a more manageable amount. My definition of being on the autistic spectrum is just having a smaller bandwidth to process all this stuff compared to everyone else. That is what causes (I think) just about everything else. Also, to add to the visual confusion in a crowd, when there is too much to process, some things HAVE to be skipped, and I think a lot of us don’t see completely in 3D and we may get some visual distortions. I have visual distortions whereby things seem closer to me than they actually are, e.g. people’s arms in the crowd, which makes the body react as if it’s under threat. The glasses help this problem because when I have less to visually process, I can see things more where they actually are, and not as closer than they really are.

    A final note on hyper- and hypo-sensitivities – what to do with the hyper ones is to insulate yourself a bit more from the world. What to do with the hypo- ones (much more fun!) is just to get yourself more of what you crave! I need more somersaults, hugs and handstands!

    I need to go and do something else now and I’ve probably forgotten to include a few things but please get in touch by e-mail if you want to know more or would just like a chat.

    Debi

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  8. Hi Debi -- this is absolutely marvellous and so well written. Thank you very much indeed. It's a revelation and has given Grace and me lots to talk about. It's also helped me to worry a little less: I love your line about needing somersaults, hugs and handstands! Here's a hug from Grace and me with lots of thanks -- <<<>>>

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