The Onion in the Petunia Patch Chapters Four and Five

Chapter 4: Future Vision: My sensory friendly housing wish list

I compiled a wish list regarding housing that takes into account the special need of the ASD individual with life-limiting sensory processing disorder (SPD).

First, I state why, for me, living in an "anything goes" neighborhood (where most people live) is unhealthy and unsafe.

-Randomness; lack of routine and predictability as faced in most typical living environments.

- Chance for harm: victimization due to natural gullibility (lack of “street smarts”).

- Lack of adequate transportation due to not being able to drive a car or tolerate the sensory overload of public transportation. 

- Staying inside, isolated from the community due to auditory and visual sensory overload.

- High blood pressure due to pervasive environmental stressors like traffic, dogs, and children playing. and underlying depression that paves the way for other health problems like heart disease, hypertension, depression and suicide (not to mention worsening of related diagnoses such as OCD).

- More reliance on Rx medication to combat anxiety and depression arising from a random, “one size fits all” sensory environment.

What I envision:

An assisted-living model facility for those with ASD with SPD in medical need of a low-sensory environment.

        

-Subsidized (at least a majority of them) so that those who don’t have rich parents can have a clean and safe place to live, covered by disability (SSDI) and any supplemental money they earn from employment (for those who can be employed). Section 8 or Section 42.

      Individual apartments for 1 person 
 (without children). This would not be a place for those wanting to raise families.  

 -Transportation: service at little or no cost to residents.

- Community room for residents to visit with and recreate with one another. that is sensory friendly. Appropriate lighting and sensory accommodating electronics.

- No olfactory distractions like cigarette smoke. 

-Auditory sensitive friendly: Not a facility for individual dog ownership as their barks carry painfully loud, causing auditory distress. This would also prevent biting and messes. Therapy dogs could visit in a community room.
Anyone who didn't want to be in the room could remain in their apartment during these visits.

- Exercise: Simple and accessible exercise equipment (treadmill, exercise bike, hand-weights)

- Nutrition:   Green space outside for residents to form a community project such as a fresh garden to eat healthy.

- On site case management, crisis management and counseling.

- Employment opportunities: (for those who can work). This would include working from home.

-A place for worship (clergy from any faith could visit and hold services)

Those with autism and accompanying sensory processing disorder that make everyday life unlivable if not for special accommodations and supports will struggle long after this recession has ended. They won’t be able to have a place to live apart from their parents, work, or connect with others-something most take for granted.

Taking what I have written into account, I can personally say that I could be an asset to my community if such a place as previously described actually existed. The economy would benefit from whatever education and job-placement I would receive via an occupational therapist. I would benefit from being able to meet, make, and maintain friends in a low sensory environment. 

Finally, parents could meet their Maker knowing their adult children are safe. Both can enjoy, worry free, the time they have left together. I wish I could say that was the case for my mom and me during her final months.

I should also say that this environment would be inclusive to the community. Residents with visitors of all ages would be welcome (providing they did not create an unreasonable disturbance to residents). 

I have touched the "tip of the iceberg". There is much more adults with ASD facing similar challenges can add. I hope this will encourage someone to do just that in their own blog post. Please share this post if it interested you. I don't see this topic being addressed enough. 

Chapter 5: Abuse of power

In May 2009, I had a violent meltdown that lead to law-enforcement and an ambulance ride to the E.R.

Upon arrival I was greeted by a screaming baby, one of the very things my ears just CANNOT tolerate. I covered my ears and begin screaming in distress and immediately I witnessed the ignorance, prejudice and abuse of my junior high and high school past was crashing down on me in adulthood. 

Several people were in the room barking questions like "What's your name?" "What meds are you on?" "Stop screaming, you're scaring the lady in the bed next to you!" On top of this, the baby is still screaming, which I am reminded "isn't its fault!" in a derogatory yell. I remind her through tears that I have autism and sensory processing disorder and cannot help my response, either. That brought a threat, "If you can't be quiet then we'll have to give you Haldol. You can't take Haldol? (I am allergic) I thought you didn't want to talk to me. Why are you talking to me now?" She continues to threaten that if I won't take it (which I don't) then she will go get security, so she does. 

I picked up the phone and called my mom, remembering to dial 9 first; as I am so familiar with hellspitals...I mean hospitals. When my mom talked to Nurse Ratchet, all of a sudden, the security guards leave along with the dripping syringe of Haldol. I reminded her that it is her duty to know the basics of autism and not my responsibility to educate her. 

After 4 hours, with my mom holding my ears each time the baby cried and closed the sliding glass door the staff frequently left open, the case-worker came and spoke with me, made out a customary wellness plan and then I was discharged. 

How could this have been different? Simple. If you are a nurse or any other member of the medical community, you know the first rule of medicine-do no harm where there is no harm.De-escalate the situation! Don't make a bad situation worse by being sarcastic or yelling.
Find out why your patient is in distress. Do what you can to make them as comfortable as possible (even if that means simply not being a jerk). Take your patient seriously. If they tell you that they are allergic, LISTEN and don't force potentially deadly medication on them. It's better to be safe than possibly kill someone and be sued and/or jailed later.
You kind folks of the medical community know who you are. You abusive, stupid ones who will defend the broken system and down put people like me, because in your heart and mind you want to see me and those like me fail. Nurse Ratchet was reported to her supervisor. 

I can't stress enough the importance of having an advocate to speak for you if you are unable. This goes for everyone. Someone in your family should have a list of your meds, doctor phone-numbers and a copy of your living will-if you have one. They should be a primary contact like a parent, child or spouse and live near you. Lastly, report abuse of anyone on the spectrum. Don't settle for just an apology. I've been thrown out of another hospital because they couldn't keep me from using the chain of command. I simply chose to report the abuse I witnessed and personally experienced as a patient on their psych unit. This involved a patient's death because he was given the wrong meds.

I want to think my generation would be the last to suffer an ignorant and hostile majority that naturally thinks less of someone who is, for one reason, not like them. I am reminded that we live in a fallen world, but that is not an excuse to remain passive.

I would like to see communities invest in autistic people, and not just in the tech world.

I have written this as a way to enlighten society to the needless struggles, discrimination and abuse autistic people like me face.