Living with an Autism Spectrum Disorder (Asperger's Disorder) as an adult female.

#ActuallyAutistic

Anonymously Autistic

A poem inspired by the #ActuallyAutistic and #SheCantBeAutistic hashtags that I keep seeing all over the place this week.

#ActuallyAutistic

You are a bit awkward aren’t you?

Actually, I am Autistic.

Autistic? You seem normal to me.

You can’t see Autism.

But you seem so intelligent.

Lots of Autistic people are smart.

You just need to practice socializing more.

I am already doing my best.

Autistic people can’t sit still.

We can, but it is hard and takes more concentration.

You must be high functioning.

Today I am, but sometimes I’m not.

Are you just looking for attention?

No, actually I prefer to be left alone.

You don’t look Autistic.

Actually I’m Autistic.

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I wrote this letter to my elected officials, because I feel the urgency to address the lack of affordable housing/living arrangements for autistic adults:

To all politicians running for local, state and federal offices:

I am writing to ask you one question: Can you help me to have a forever home?

I am sure you have not been asked a question like that before-at least from an autistic adult.

My problem is that both my parents are deceased. I have always been blessed to live in a neighborhood that is relatively quiet. I have lived in my home since my parents brought me home from Sherman Hospital in Elgin, IL 37 years ago. My older and only sibling now heads the household and she looks out for me.

But here is the question: Where will I live when she is gone? She is 12 years older and not in the best of health. I cannot work and make a living for myself. I am 100% dependent on her for everything aside from feeding and dressing myself.

I come across as a conundrum as I have an IQ of 110, but executive functioning comparable with a child. My severe sensory issues, primarily with dogs and children, make living just anywhere impossible.

I would be a horrible candidate for group home or section 8 apartment living. Those options are noisy and random. It would not be a safe option for others as well as myself.

There needs to be facilities built right here in Illinois, similar to Lambs Farm-where people can contribute at their individual level and also live free from the sensory agony of barking dogs and kids screaming on jungle gyms and teens blowing off fireworks in summer months.

My mother envisioned campus style living where each person had their own apartment, but no dogs or kids would be permitted to live there. What I envision would be more rural and have small, independent cottages fewer than 600 square feet.

A caregiver could live there if the individual wanted.

Autism is not experienced the same from one person to the next. As Stephen Shore said, “If you have met one person with autism, you have met one person with autism.”

There needs to be an oasis from the regular world, which is saturated with noise and distractions.

I don’t want to hear any more rhetoric about who did what. I want to hear if you care enough to work with agencies like AID and Pioneer Center along with others to create the kind of environment I’ve mentioned-and make sure it includes the poor like me who are among the 80% of autistic adults who can’t find work or are unable to.

Again, it would be safe for the regular community as well as the afflicted individual like me.

I don’t need to hear any more about our state’s debt. Money can always be found for infrastructure-maintaining our roads and bridges, but what about maintaining safe living environments for the most vulnerable among us?

I don’t want to wind up homeless or in jail because I didn’t have a safe place to live and couldn’t do the options currently available, had a meltdown and hurt someone or myself.

Sincerely,

Allison

The election season is here. Please contact your local representative and voice your concerns about whether yourself or someone you love with autism having a safe place that accommodates their needs when parents are no longer alive. Community group homes and section 8 apartments (where crime and kids run rampant) aren’t enough.

Feel free to adapt and/or share this letter.

Find your U.S. Representative: http://www.house.gov/representatives/

Find your U.S. Senator: http://www.senate.gov

 

 

http-www-pixteller-com-pdata-t-l-517673

I am literally in panic mode after being exposed to a sound I can’t tolerate, though I got rid of it by killing the volume on my speakers. I wish I could do this with dogs and children in real life.

Better yet, I wish there was a device that worked the opposite of a hearing aid. Rather than amplifying sound, it would lessen ambient sound in increments from regular volume to completely (artificially) deaf.

And it wouldn’t have to cost thousands of dollars.

It would even block concussive sounds like fireworks.

Maybe there is a silicon valley start up for that?

Feel free to share and maybe this idea will become a reality.

I’ve been screaming on the inside for about 3 weeks now, since neighbors set off an M80 in August.

I’m coping, but coping is all I am doing.

Image: Shutterstock. Meme created on PixTeller.

I have been told I don’t appear to be autistic-when children and dogs aren’t around and it’s quiet and predictable. No wonder people have said this to me in my home or in a quiet small shop.
Thanks to Anna for sharing.

Anonymously Autistic

A powerful hashtag (#SheCantBeAutistic) has been blowing up on Twitter this month bringing attention to an issue that I’ve been talking about a lot recently.

I was not diagnosed until I was almost 30 years old because people thought #SheCantBeAutistic.

They were wrong. I am Autistic and I spent too many years waiting to find that out.

Below are just a few of the reasons that I “can’t be Autistic”.

#SheCantBeAutistic – she has a great job.

#SheCantBeAutistic – she pays her bills on time.

#SheCantBeAutistic – she works full time.

#SheCantBeAutistic – she has a husband.

#SheCantBeAutistic – she has pets.

#SheCantBeAutistic – she is too smart.

#SheCantBeAutistic – she wears makeup.

#SheCantBeAutistic – she bathes.

#SheCantBeAutistic – she is very talkative.

#SheCantBeAutistic – her imagination is rally good.

#SheCantBeAutistic – she has feelings.

#SheCantBeAutistic – she knows how to read and write.

#SheCantBeAutistic – she is successful in life.

#SheCantBeAutistic – she seems happy and warm.

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In 2007, my mom, aunt and I went to an autism “support” group. I don’t remember how I found out about the group, but I had asked via e-mail if there was anything for adults. The group leader said no (of course), but that they might consider starting an adult group. This was a group run by parents of autistic kids. They were the main ones present at the meetings. There was only 1 other autistic adult who didn’t come often. Not long after my query, I was contacted to say that they would put one on the schedule and was e-mailed a copy.

I was excited. An outlet for me. Resources and sympathy available for my 67-year-old mom.

My mom said she had a bad vibe from the first meeting. I didn’t see it, but by the 4th time it became clear: they were a clique, and if you thought thoughts apart from the clique then they hurt you.

When my mother voiced her opposing opinion of Autism Speaks and Jenny McCarthy and I expressed my concern over a coming speaker via e-mail, they e-mailed me in return to say they’d been talking about me among themselves.

They told me how angry they were and had suggested I never bring it up again.

These are adults who have kids on the spectrum. How would they feel if someone treated their kids the way they treated me? I use the present tense as autism is a lifelong condition. We may learn how to manage some things better than we did as kids, but we still have it.

Speaking that  kind of truth to power turned them against us. Anyone who allied with them (NISRA and Kennedy Krieger Institute) cut off all contact with me. My input was no longer a priority.

I still mailed all the pictures I took-voluntarily- (and my mom paid for) of a group gathering to them. I do admit the rejection hit me so hard that I called their office immediately after reading the e-mail and left a nasty message on their answering machine. I was 28 then. I have an average IQ, but my emotional reasoning was poorer than it is now-and it still isn’t very good.

I respond twice as harsh as a way of protecting myself. If I act loud and scary enough, then the bully will stop hurting me and leave me alone. Unfortunately, this theory has led to trouble with the law  and it only works occasionally.

This was another nightmare to add to my list of autism related nightmares: Being shamed for being different from the different (I assume that having a kid with special needs puts a parent into a lifestyle different from those without a special needs kid. I always hear parents who have special needs kids say how sensitive they become in ways they wouldn’t if they hadn’t had a special needs kid. That wasn’t the case with me and this group.

I experienced similar results with an online support group run by autistic adults-Wrong Planet and another run by Autism Speaks (I was naive of them back then). Don’t think like the majority, get shamed. Get nasty things said to you until you are too humiliated to continue. Nobody coming to your defense and nobody to reason with.

This is why I don’t do support. It backfires every time-at least outpatient and independent from hospital support groups.

I have never experienced what a community is-acceptance, inclusion, working together toward something bigger than one person alone. At least this is what I have observed in movies and read about in books (actually listen to on audio).

I’ve spent over 3.5 decades getting ejected from or tortured by it.

I will say that the USA has a problem with agreeing to disagree respectfully. I hear about this all the time in the news or on Podcasts. One theory is that people can’t separate their emotions from others opinions. If someone disapproves of their opinion, they take it to mean the person disapproves of them. Personally. They can’t handle it, so they retaliate. Case in point.

Not to be sarcastic, but aren’t NT people supposed to know this? Maybe it is actually so based in logic only autistic people can get it. I never thought anyone disliked me for my voicing a dissenting opinion-and then I went to school and learned otherwise.

This is also why I don’t enable commenting. This isn’t a social platform.Social platforms for me are seas where sharks swim and circle. It is to raise awareness about one person with autism-their struggles with seemingly unique twists and turns. Some victories. Not to trust or hold hands.

I’ve had those hands slapped (literally and figuratively) too many times.

 

Perspective check

ticked-lily

This is pretty much how I’ve felt all week-ticked and in need of hiding. Instead of showing you my mug, I thought I’d let the cat show you hers instead😉

chicks-seeking-warmth-and-shelter

In the wake of self-defense, I need to remember that God has blessed me. My life isn’t a horrific one. It is a bearable one. At times, I actually get to enjoy myself and express my love of nature photography.

Just as these chicks have food and warm shelter, so do I.

dsc_3942

I have family that cares about me and support me. I even have a good friend. It is about the quality of people, not the quantity. Part of their support is helping me purchase bead material and to help me sell it locally. Even though I do have fine motor skill delay, I can use larger stretch cord and larger beads to create the patterns I see in my head, in nature or by way of someone else’s vision.

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I also have a wonderful imagination-something I have always had-a contradiction to the “autistics don’t have imaginations” misnomer. I have always had a very rich and detailed imagination. It is childlike and magical as well as dark and graphic sometimes.

brunner-field-916-wm

Fall is coming-my favorite time of year. Cooler and quieter. Gorgeous jewel-tone colors all around. In the meantime, I will try to keep my balance regarding difference AND disability.

The sky is boring without a few clouds in it. I imagine if everyone was the same in this life that it would be like one big blue sky-pretty, but boring as heck after staring at it for awhile.

This is a guilt-free zone, so if you can’t read every post or decide to unsubscribe for some reason, I’m not offended. My goal in maintaining it isn’t for relationship pursuits, but for education from one autism *expert*.

images

Well, I’m at least the autism expert of autisticaplanet🙂

God bless and thank you for stopping by.

dsc_3944 I am in bed 12-15 hours a day due to psych meds and de-escalating from my day-any day. Noise cancelling headphones and my iPod help me relax.

dsc_3962

Earmuffs are essential when I do go out. So is a help person who can drive and prevent meltdowns.

dsc_3968 This is how most of my day is spent if I am not cleaning house or beading. The DVR is my constant companion. Due to my autism, going out in public and making social connections of any kind are out of the equation. This includes adult autism support groups that meet en mass and go to loud public places. Groups like these are all that is available in my area.dsc_3952

Rocking is my constant stim. It helps soothe my chronic anxiety.

dsc_3947I am in my pajamas most days, because there is no need to get dressed. Going out in public is a draining experience I can only afford to do once a week-if I have a help person who can drive.dsc_3953 I am on 6 different RX prescription medications to help me deal with mood and anxiety issues as well as manage hormones.

When an autistic blogger (who usually states they hold down a job, marriage with or without kids, mortgage or rent) says “Oh, autism is just a different processing speed or way of thinking”, I get angry.

Why?

Because you DO NOT speak for my experience!

And yet you keep on speaking for me.

I feel bullied, to an extent, for those who deny the reality I experience by speaking broadly-this is what Autism Speaks does-and many autistics don’t like others, especially AS, speaking for them.

Autism and all it entails is disabling to some degree. If you have learned to manage it with supports you got from infancy, congratulations. I didn’t get any help when I was young as I was way too old by the time autism was a household word.

Denial will only spread more confusion about autism.

Even with the help I did receive and am currently getting, the crippling SPD,  chronic anxiety and OCD I have are a direct result of having an autistic brain. I can’t mask them or separate them from my strengths.

So, autism bloggers who only see autism as a difference, before you bang the “autism is a different way of thinking” drum one more time, consider adding a disclaimer to your posts that reads something like this:

For me, autism is a way of thinking differently, but for others with autism, it is disabling and life limiting.

Read this wonderful post by Judy Endow addressing the issue of autism being both a disability and difference: http://ollibean.com/autism-disability-difference/

Disability is only a dirty word if you let it be. Don’t let ablest society further the stigma by denying that disability exists. If disability is such a  bad thing that we mask the disabiling symptoms in order to make them “go away” and appear only “neuro-wonderful” then we send a message that disability doesn’t exist or it is such a  bad thing that  we need to hide it. The ablesists win.

Ability is found in disability. Autism has its strengths as well as weaknesses. Some can manage better than others. Please don’t deny the autistics who will never cope as well as you do.

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