My “Open Letter”to Family and Friends

Let me begin by stating I do not often get into situations which overwhelm me, as I know myself and have engineered my life to be as accommodating to my sensitivities and (low) social situation tolerance. I also have wonderful support and a therapist who can walk me through the occasional out-and-about snafu, as well as a support person who accompanies me on most outings and can get me out of there – quickly, if necessary.

I wear noise cancelling headphones when out in public and carry a comforting stim item, such as a squishy centipede or spider, and never travel during busy times; I make my appointments for after the work commute and before the rush home later.

I avoid crowds such as at malls, fairs, movies, etc, preferring to be alone as much as possible.

I do not stay out any longer than a few hours at a time, and retreat to my solitude when I get home. I rest when I need it – often -and sleep about 9 or 10 hours a night.

This may sound sad, this severely restricted public life, but it works for me; I am mostly content and calm. There was a time when I tried to join the fray, and then there were many episodes of decomp daily. I tried to force myself to travel at rush hour, for instance, thinking I could train myself to cope with the stress. Didn’t work.

Then I got wise and tailored my life to ME.

I wrote this for my hosts in Colorado and it was formatted in columns which did not translate here; hopefully, it is still understandable.

At the risk of frightening those who read this, in hope this may help  here goes…

Have many sensory processing  issues, some extreme, mainly auditory and defensiveness to being touched or crowded (2 or 3 feet is a good distance to maintain). I seem to be constantly feeling or touching something soft or squishy, such a a lock of hair or a squishy toy, I also smell most things I touch, but don’t like them in my mouth and gag easily. Selective with foods.

Marked reaction to unexpected or loud sounds, voices,arguing.

Babies and children can cause me to run from the sounds they make.

Don’t do well with busy and cluttered visual spaces.

Extremely  hyperactive with short attention span unless fully engaged.

Poor eye contact. It is too difficult to concentrate while maintaining eye contact. Eye contact feels violating.

Easily frustrated and will whine and stim more as I get overwhelmed. May hit chin and cry.

Cannot hear or see well and often forget to wear my glasses which I need for distance vision and computer work but not reading

Have problems understanding speech, complex instructions and often do not request clarification.

Allow me to wear my noise cancelling headphones, don’t hug or touch me unless I initiate it. Firm touch as with OT equipment or stim toys,  which I always carry, are regulating.

Let me cover my ears and/or move away.

Let me move to another room or space if I feel the need.,

Help me organize a neat workspace.

Allow me to stim, but keep redirecting my attention to task. Help me create a written daily schedule, take timed breaks.

Recognize the signs of impending “decomp” (my term), and insist firmly without yelling, that I take a quiet break with music and stim toy

If you see me without glasses, remind me to wear them.

Speak in simple sentences facing me.Break down task ask me to repeat – not echo!

Nearly always stimming, but usually paying attention – ask me if I understand if in doubt.

I engage in self talk. Request I not do this if it disturbs others. If I cannot desist request I move to another space until I can stop.

Non verbal when in decomp. Don’t try to force speech.

I love animals and am very good with them. They are very calming.

Public outings, such as shopping or riding public transportation are very stressful and I make more non verbal sounds and stim even more than usual.

I am  very intelligent and can be extremely frustrated when unable to express myself verbally. This can often lead to a mini decomp where I storm away.

I like to exercise and read. Both help with self regulation, although reading can be an excuse to isolate.

I love to cook and organize spaces and computer troubleshooting, especially hardware, and am good!

Let me stim. I will stop when engaged with a task which requires my hands.

If, in decomp, help me move to quiet place and let me calm myself ALONE. If very upset, you may hug me firmly after asking.

Where are the KITTIES and DOGGIES?

I can tolerate limited social venues, travel at less crowded times and limit my exposure to crowded places. Let me stim. It calms me.

Remind me to slow down. Please be patient. I will return if I storm off after calming myself. Usually soon.

At Autistry we do sensory diet activities such as pushups or exercise bike in intervals throughout the day; I need to force breaks, as I forget how long I have been engaged in a task, sometimes to the point my body hurts.

Let me cook and organize!

I wear a weighted vest sometimes to provide tactile pressure. It also carries my stimmy toys, ID, phone, etc., and I wear a scannable QR code dogtag with emergency info.

Though I dislike the feel of water from the shower and mainly use baby wipes, I abhor dirty feet and hands, use antiperspirant.

I overheat easily – anything over 55 or 60F is warm for me – but I know when to add a layer. I like to sleep in a cold room (about 40 to 50 degrees).

I can get over excited and silly, repeating a phrase I find funny ad infinitum, but do respond if requested to tone it down. This is more likely if I am sleep deprived.

Same goes for the obsessive querying about some current concern of mine.

I do not like to socialize and prefer to be alone, but can handle brief periods of human interaction, usually no more than an hour or two.

Often don’t recognize and respond to somatic sensations such as hunger and will forget to eat. My decomps and frustration levels can be adversely affected if I get hungry or overtired.

Recognize why I am wearing the vest and don’t make fun of it.

Don’t assume I am cold because I seem “underdressed”!

I require regular sleep of 9 to 10 hours. Lack of sleep severely and negatively impacts my behavior.

If asking something repeatedly, I am looking for reassurance and can be gently redirected.

One – on – one interaction preferred. A break between periods of interaction helps.

Remind me to eat. A regular meal schedule helps, as does access to  snacks. If excessively frustrated it could simply be I need to eat!

I will sometimes isolate and not participate in activities; encourage, but don’t force me. I appreciate the offer to be included.

It is easy for me to get separated as I am often not paying attention to what others are doing or where they are going. I also do not distinguish individual faces (unless I have known them a long time), so most everyone looks the same. (I make a very poor crime witness!)

Am very sensitive to anger and shut down or respond in kind so appreciate calm.

There are certain words or phrases which set me off, e.g.; “Calm down”.

Please encourage me, as I really want to be included, just don’t know how to join in. I appreciate being wanted or needed.

Best to set a rendezvous point in advance so I can go there and wait.

Have cell phone on and make sure we have exchanged numbers.

Try to be calm and use a gentle tone of voice with me, When I laugh inappropriately or interrupt it is OK to remind me this is inappropriate.

NEVER tell me to “calm down” or “shush” me, especially with that “down” hand gesture.

 

 

 

 

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2 Comments

    1. A ‘stim’ is a repetitive motion, like rocking or twisting a lock of hair which calms or helps kerp me alert or focused. A stim toy is simply something to fiddlr with, like those stress balls people squeeze at their desk.

      Like

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