Safety for People with Autism and Other Hidden Disabilities

Red Medical Cross Picture with White Medical Symbols Inside It

Attribution given;  <a href=”http://www.freepik.com/free-photos-vectors/background”>Background vector designed by Olga_spb – Freepik.com</a>

I missed a week of blogging due to the difficulty I’ve been having with my Dysautonomia and my ASD (Aspergers) and the effects of the trauma from what has happened at Emory. I’ve experienced several full-on meltdowns due to all the stress and the barriers I’m encountering in trying to get my healthcare back on track.  

Meltdown

I’ve been having fitful sleep interrupted by nightmares which are clearly due to the bullying I’ve suffered. The theme is always some sort of sabotage. In the nightmares I’m trying to achieve some goal and somebody comes along and destroys whatever I’m doing and I end up in some sort of danger as a result.

In one such bad dream I had lit a match in order to relight the pilot light on a stove and someone came up behind me and knocked the match out of my hand.

Closeup of a business man with his hands behind his back and fin

Closeup of a business man with his hands behind his back and fingers crossed. Torso and hands only, man is unrecognizable.

It fell from my hand and behind a dresser. I tried pushing the dresser aside but it was too heavy. Meanwhile the room quickly burst into flames as the fire spread from the carpet to the drapes and soon everything was engulfed. I then found that I couldn’t move to escape it no matter what I did. Just as I was about to be burned alive I woke up in a panic. It took quite awhile before I could fully come out of it and realize it wasn’t really happening.

Burning Up

In another dream  I was getting ready to mail a very important letter and I was in some sort of cabin in the wilderness that was at the edge of a steep canyon. In order to mail the letter I had to climb down somehow on the edge. There was a crack in the wall handmade from plywood overlooking the drop below and the letter got stuck in that crevice. I tried to pull it out and was relieved when I could do it, but as soon as I did, along came somebody from behind me who swiftly pulled it from my grasp and shoved it through the crack in the wooden wall. The letter fell and was gone hundreds of feet below, never to be retrieved again.

House at Edge of Cliff

Alot of times the sabouteur comes from behind me and I don’t see their face. I can’t tell if it’s a man or a woman because they never say anything and I wake up before I can turn around and look.

In addition to the element of danger in these dreams there is alot of uncertainty.

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All this got me thinking about just how crucial it is to build a plan for safety. People with Autism and other hidden or misunderstood conditions are especially vulnerable to abuse and neglect in a number of settings; for instance, police officers often mistake people with epilepsy for being publicly intoxicated,

Glowing brain

and many people with such conditions as Autism, Dystonia, and Dysautonomia as well as other poorly publicised conditions are mistreated in healthcare settings just as I was.

This is something that is not spoken about nearly enough in the news or in other public forums but doing so may very well save lives.

Here are some things you can do to help prevent falling victim to those who might abuse, neglect, or exploit you thinking you’re an easy target because you’re in a wheelchair, you’re frail, have communication or cognitive difficulties, or have other disadvantages which may leave you in a compromising position.

Safety First Life Preserver

1) Wear a medical alert bracelet;

Try to get as much pertinent information on it as possible that people would need to know in an emergency and/or if you are misinterpreted in the workplace, school, by medical personnel, or law enforcement, or in any other public place.

If you can, list a contact person you know who is willing to be contacted and can advocate for you to explain your needs. Nowadays there are many types of bracelets on the market that you can buy. Some of them are even nice looking! See some medical alert bracelets on Etsy .

2) Carry a medical alert card at all times;

You may be able to fit even more information on the card than you can the bracelet but you should try to have both since somebody may not think yo look in your wallet if you are unable to tell them to do so. This organization came up with some Autism Alert Cards you can customize. This company located in the UK sells bracelets that include cards with them.

3) Carry an official diagnosis document at all times;

this can be any official letter you have which proves your diagnosis (if you have this documentation). If not, you should speak with someone about obtaining one. This can be a testing report, a letter from a doctor or therapist written to whom it may concern, or if neither are available, something from your medical record with your official diagnosis on it.

Taking notes

Ideally you should have something not only listing your diagnosis but specifying what your limitations and special needs are, any medications or treatments which need to be given, etc. If you have a supportive doctor or other medical professional, his/her name and contact number should be on this paperwork if at all possible.

4) Bring a buddy with you to the hospital;

In the ER

If you have some advance notice that you’re going to the ER or checking into the hospital on direct-admission try to arrange for somebody to come with you.

Emotional Support

It should be someone whom you have spoken with in advance about your needs and limitations; preferably somebody assertive who will not have a problem speaking up to authority figures in your defense while still remaining calm and rational.

This person can keep an eye out for you and can also act as a witness in case anything goes wrong. If they have a cellphone they can also videotape if somebody is mistreating you.

On Cellphone

If you don’t have anyone in your life to fulfill that role be sure to contact one or two people before leaving and let them know which hospital you’re going to (and if possible give them the phone number so they can call and check on you). Bring your laptop or some other mobile device that has internet access. That way you can give them updates.

Making Plans

One of the things I learned as a patient advocate years ago is that people who have someone actively checking on them are less likely to be abused or neglected because it’s more difficult for perpetrators to get away with it and the likelihood is that they’ll get caught. This is often enough of a deterrant and they won’t even attempt it. (I’m pretty sure that if I had had somebody willing to go with me or meet me at the hospital in December that my incident wouldn’t have ever happened).

Taking these steps can’t guarantee you will never be victimized but they can make it much less likely.

If you do find yourself in a situation in which you’re abused, neglected, or exploited, be sure to document as much as you can about exactly what happened. Take down names, times, dates, what they did that they shouldn’t have, and/or what they didn’t do that they should have, etc.

Then I would recommend contacting The Dept. of Health and Human Services and filing an Office of Civil Rights Complaint.

Filing with State regulatory agencies in my experience is often a complete waste of time, as usually doctors are automatically believed carte blanche by such decision-making bodies and therefore it is not a level playing field. Usually such investigations consist of review of the records to see if anything “not meeting the standard of care” is documented (and of course doctors aren’t going to rat on themselves or each other in a patient’s record), they write up the perpetrator’s side of the story, and send it to the patient.

In some of the more progressive states filing a complaint with the state medical licensing board might yield results if the malfeasance was committed by a doctor, but often doctors are reluctant to discipline their peers (the medical boards utilize doctors to investigate the claims and determine the outcome, if any). Generally they have the option of making any action taken either public or private. If they take private action they might keep that secret and not even let you know they are doing anything about it at all.

How You Can Help Now;

You can also send letters now to HHS asking that they make Institutional Bullying of medical patients/people with disabilities an added Civil Rights violation in the same way it’s interpreted in statutes for Institutional Racism. Please also ask that clear-cut consequences be specified in any new legislation and/or amendments.

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Given that this is an election year this is the perfect time for you to send your letters! The more of us who write and make our voices heard the sooner we can make this type of abuse a thing of the past and prevent others from having to endure these atrocities in the future.

 

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 HHS HeadQuarters                                                                        

US Dept. of Health & Human Services                                

Attn: Secretary Sylvia Burwell                                                  

200 Independence Ave., S.W.                                

Washington, D.C 20201

Phone (Toll Free); 1 (877) 696-6775

Go here to file your official grievance if you have been discriminated against because of your condition and/or not given reasonable accommodations for your special needs. You can file by snail mail, email, fax, or via their online webform. (All communication options and requirements are explained on their website on the paged linked-to above).

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Although this is covered under current law there are still many people who unfairly make allowances for it when this happens to people who are ill and/or disabled in a way they would not with other minority groups. There should be a zero tolerance policy for this type of discrimination and a recognition by all that this is every bit as heinous (in many instances even  more so because this population is at a greater disadvantage than most other minority groups)

And now for a good protest song;

This Land Is Our Land

 

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Beware of False Allies

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I’m sure you’ve heard the phrase “beware of false idols”. Well same could be said of those people in your “inner circle”; those in your support system.

As chronically ill people we are often too tired, depleted, and focused on obtaining the practical help and services we need to feel better and to get better to clearly discern whether those in our support system are truly supportive and whether they are helping or in fact hindering or hurting us.

We may in our quest to feel better not see (or ignore) signs that others who seem to want to help in reality have agendas that run counter to what we want for our lives, and their attitudes and biases might even throw a monkey-wrench into our goals and plans.

When that person is a doctor or other medical professional, while such people may have been helpful initially there may come a time when they cease to be or when their true colors come out and show you who they really are versus who you thought they were at a very crucial time in your life.

Be kind to yourself: Sometimes for various reasons you may not recognize when someone in your inner circle is hurting rather than helping you, not respecting your wishes and boundaries, or otherwise acting in ways that end up detracting rather than adding to your health, well-being, and happiness.

You may start to see (or feel) that something isn’t quite right but brush this off as paranoia, telling yourself not to look a gift horse in the mouth, and you might find yourself hanging onto people longer than you should because you’re afraid you may be going from the frying pan to the fire.

A false ally can violate your trust, jerk you around emotionally, and leave you confused between what your heart versus your head tells you. At best they can be ineffectual and unhelpful, but at worst, a snake-in-the-grass who has the capacity to sabotage your health and your life. If this person is a doctor or other health professional and their actions are significantly hurting your life you may want to report them to their supervisor, the head of the department or facility, and in some cases, the medical licensing board. You might also decide to report them to the Better Business Bureau.

Impaired professionals are sometimes very toxic people and not fit to practice due to their own personal biases and problems and are unwilling to voluntarily work on them. In such cases repeated attempts to work things out with such a person are unsuccessful and continuing the relationship becomes untenable and anti-therapeutic.

Each person has to use their own judgment as to what to do when they begin to see signs that interactions with these helpers are not going well and put the necessary replacement infrastructure in place, but if the situation becomes so injurious that these people are doing more harm than if you had nobody fulfilling those duties/needs you may need to cut them out of your life for your own health and sanity even before you have better supports in place, then look for those afterwards.

Here are some distinctions between true allies versus false allies

True Ally Versus False Ally

  • True ally: you feel empowered and supports your confidence in making your own decisions. You feel happy, relaxed, inspired, comforted, and hopeful for the future.

  • False ally: you feel deflated and/or defeated, powerless, intimidated, and/or irritated after speaking with them and begin to doubt your own perceptions, feelings, and decisions. 

  • True ally: you feel secure in the fact that they’re there for you and will be for the duration.

  • False Ally: you have the growing feeling that their support could end with little or no warning or provocation, and it begins to feel conditional, they become increasingly unreliable, passive-aggressive (what I refer to as “weasel meanness”); they “forget” to do tasks they promised, do them very slowly, need repeated reminders, or don’t keep their word, let important tasks like writing orders fall through the cracks, and leave you in a jam.

  • True Ally: Communication is two-sided and the person gives you confirmation that they agree and are supportive of your game plan, is happy for you (and may even offer to help unsolicited).

  • False Ally: What they say to you directly doesn’t seem to add up with what others hear from them about the same interactions with you, or you find evidence that they didn’t do what they said they’d do to help or support you.

  • True Ally: Their written and verbal communication seems warm and open, they smile, make eye contact, and answer questions fully and directly, seem interested in what you have to say, and respect your wishes. They point out and focus on your strengths and assets and seem happy to see or hear from you.

  • False Ally: Their written and verbal communication is evasive, stilted, legalistic, guarded, incomplete, needs repeated clarification, and communication with them seems inordinately hard even after repeated attempts. They don’t remember important facts, and seem uninterested or irritated by your requests/questions, and/or body language seems inconsistent with what they say verbally; i.e. they like you and want to help yet roll their eyes, cut you off when you talk, or under-react to, gloss over, or minimize the importance of your pain (physical or emotional).

  • True Ally: Willing to go to bat for you, recommend you, stick their neck out, defends you against attacks, takes steps to keep you safe, unequivocally “on your side”.

  • False Ally: Seems luke-warm or lack-luster in their endorsements of you to others, unwilling to stand up for you, conveys they believe others over you when you’ve been wronged or says directly they don’t believe you, questions your credibility directly or indirectly.

  • True Ally: Understands and appreciates you more over time, positive interactions increase, thoughtful and seeks to make thing easier for you given your individual circumstances, makes statements that convey that they care and feel warmly about you.

  • False Ally: Appears tired of you, less empathetic, seems uninterested and even annoyed about your individual needs, unwilling to put much time in, seems under-concerned about your condition and does nothing to reduce your work-load and stress level, and makes insensitive or sarcastic remarks referencing you in a bad light, takes an outright oppositional stance to helping with things in ways you request, even walks out of a room while you’re still talking.