Accessibility for ASDs (and other concerns) in Shelters
We have been talking in the victims of abuse thread about various things we think are needed, and Shelters (protection from abuse and temporary housing) and concerns of accessibility for those with ASDs. Therefore I decided that we really need a thread, because this is an issue that comes up over and over again.
What do you think an accessible shelter would be like for those with ASDs?
What do you think is the biggest difficulty faced by women on spectrum when considering a shelter?
If you have been in a shelter before, how was your experience of the Shelter? What was the best and the worst things? Were your safety needs met? what about your other service needs?
Feel free to add questions to the discussion as well as responses- I prolly forgot to ask something that would give us a lot of input!
Well, speaking for myself, I don't have the best social and communication skills. It is difficult for me to use language normally but when I am distressed it is pretty much impossible. How are people at a shelter going to find out what I need if I am unable to use language to communicate? I am not merely speaking about talking but also about writing. When my brain is stressed out it seems that I can no longer use or really understand language. And there is no doubt that if I am at a shelter that I will be stressed to the max.
Stephanie, that's interesting. When I am very upset, I can't speak either. This goes back as far as I can remember. I do understand what is said to me, and I do have thoughts and words. But I can't get them out! My mouth hangs open, and mostly I'm silent. After a time out and deep breathing, I can speak again. This reminds me of being bullied in fourth grade, when kids would line up to punch me in the arm for missing the baseball during PE. I was freaked out beyond measure and could not speak to defend myself. And the kids seemed to think that was funny. I think this loss of speech also encouraged my father to new heights of melting down on me, because I wasn't responding.
I'll also second what Stephanie says about having difficulty communicating when upset.
From my most recent experience (very very recent), I know that I considered going to a shelter, but didn't because of a few factors.
One was that, as above, I wasn't sure I could communicate what my situation was.
Two was that I wasn't sure that my situation qualified as needing a place in the shelter. For all that I was certain I'm in an abusive situation, and people are telling me it's abusive, when it's emotional abuse, it's hard to tell whether I'm over-reacting or valid in my reactions.
Three, I'm not sure whether shelters have the accommodations I need to prevent me from melting down, mainly, a clean, quiet room all to myself and hopefully with internet access.
and four, it's a new place. New places are scary.
I get what you are saying Corina. Here where I live shelters don't have the accomodations I need. They mix everyone together (men and women) including sexual predators and people have mats on the floor. There is one women's shelter but everyone just piles in a room together and when I stayed in the youth shelters that were similar (but everyone was under 18 there) I always had to be admitted to a psychiatric facility because of the sensory overload in the shelter and not being able to deal with all the people. So I can't use a shelter unless I have a seperate room. I am not in a domestic violence situation though (just homeless due to financial situation) so I would bet that some women's shelters for domestic violence have private room accomodations. But yeah, trying to explain your situation in a verbal manner is so hard. I find it nearly impossible actually. Sometimes having paper and writing if you don't have access to a computer can help and then they can just read what you have written. I wish that every person with ASD had a laptop as an assisted communication device as I think it is very helpful for communicating when you can't talk. Mine has certainly saved my life.
My family( my husband, myself and our then 6 month old son) were homeless for a period of time, and they treated eveyone like a child. They didn't allow phone calls after a certain time, and wouldn't let me go out after 9pm to pick up a new prescription that my dr. ordered for severe anxiety, and I needed to start taking it ASAP. They said that I could go and get it but it would be one strike against me. ( 3 strikes andyou are out of the shelter). When it came to trying to get ahold of my Dr., they made it very difficult. Everyone was assigned to do a chore and for me, there are certain things I can do and certain things I can't( due to anxiety, etc), and if you didn't do your assigned chore, another strike against you. Nothing like threateneing your well being and your housing to cause a panic attack. Only then, did they listen to me, somewhat. We still got told to leave after being there for about 3 days. I also needed to have snacks available, as my blood sugar would drop quickly, and they didn't alllow food in the rooms, and there was no food available other than specified times. Of course, I had to hide some snacks in my room, which was another strike. We also had a situation when my husband and I had very little time to get everything from our old house that we were renting( had a fire) and the landlord locked us out of the house so we couldn't get our stuff. He left an eviction notice on the door. ( his actions were illegal)fire was accidental, but the landlord said it wasn't( He was a lawyer, and in to get $$$$ as the city wanted to demolish his property along with others to put in a parking lot for the nearby teaching hospital. He also was retaliating becasue we turned him in becasue the house was not up to code(severe voiolations , like black mold in a closet downstiars(he locked it and told us not to go in there. We were getting very sick and we got the door opened to discover black mold covering everytying in it). The landlord was going to trash it all, and the homeless shelter instead demanded that my husband go to work, and I go to a support group for abused women( all women were required to go wether or not they were being abused. So... I had to choose between being kicked out of the shelter, IF I didnd't go to this meeting, instead of salvaging my only belongings. what a choice. I had a whole house full of furnature, baby things, etc. and I was NOT about to just let it all go. WE got a storage unit, and put all of our things in it and then camped out in my Moms back yard in a tent till we found assistance for a deposit to move in somewhere else. (camped out in the back yard, becasue my brother, his girlfriend and her 3 kids trashed my moms house and it wasn't sanitary. These shelters could use alot more understanding that we are adults, not children, and have things that must be done for the sake of our well being.
is there any programs that will read aloud what is typed? I have a laptop, and it has opened up a whole new world for me that I didn't know was out there. I take my laptop everywhere,and use it to type notes, as writing notes, etc is hard for me. I also have a hard time organizing papers, where organizing my things on the computer takes up much less space, and it is all in one spot so I can find it. I shut down when in overload, and can't comunicate. Especially if I feel like everyone is all turning on me all at once or I am being what I feel is unjustly criticized.
I've lived a cumulative time of a month between two transition shelters for abused women and children and then another 2 years in a second stage housing/counselling program for abused women and children and I can say one thing, while it helped me... it wasn't really as accomodating to me and my sons, because of my social skills issues, sensory issues, etc. It made living the first cumulative month in a shelter with about 21 other women and children a bit of a nightmare. Especially the lack of much space or privacy either. It was also very noisy too.
I appreciate the difficulty in communicating and even speaking when upset.
I made a bunch of little coloured cards with specific "important" messages on them for when I get to this point (only actually needed to use them a couple of times).
Maybe the shelters could have a labelled "retreat"/"alone"/"de-stress" area and have an obvious set of communication cards or sheets like these cards...
I think any shelter for those with ASDs NEEDS to have personal areas. I can imagine having a group of people with ASDs stuck in a place together with nowhere to go and simply have downtime. I know this would likely cost much much more, but there's no point providing a service if it is going to be damaging. I mean, they pay for disabled ramps for those with mobility issues etc, why can't they accomodate for the differences ASD people experience.
There was a time when my children & I were forced to seek safety in a domestic violence shelter. We were fortunate to have a wonderful support system at the women's shelter and it was a learning and growing experience for both my children and I.
My son is on the spectrum and is also challenged with neurological related matters. I look back at the time we sought refuge for safety & I realize how blessed my family was to receive the resources we needed to become independent and safe in our own home again. However, this is not the typical scenario for many autistics and their families.
My son experienced several sensory challenges during our stay at the women's shelter, but as I said before, we were lucky as our experiences is more often the exception not the rule.
I observed huge improvements with my son once we were settled into our own home, but it took more than half a year before my son's sensory challenges (related to the shelter environment) improved after moving into our home.
Though my son still expresses a deep gratitude in his poetry for our family having access to the shelter for our safety, he also includes in his poetry some of the struggles he endured due to the communal living environment.
I (ASD) went to a women's shelter 2 years ago with my 3 (2 ASD) children. Their father (the man I left) called the police and child welfare "concerned" about their safety and my mental health. I had a letter from my psychiatrist explaining ASD. Despite the child welfare crisis worker's evaluation of my functioning at an 8/10 (higher than most non Autistics in crisis), the system got scared of my diagnosis and police carried my kids (without shoes or medication) to child welfare who took them to their dad. I got served a supervision order for endangering my children because of my "unstable" decision to go to a shelter. The order meant I could only see the kids for a maximum of five hours a week with a professional supervisor (different almost every time) at a supervision building that required us to all be in the same room at all times. I'm an ASD educator by profession. The shelter staff, police, child welfare, courts, supervision people - none had (or, to my knowledge, have had since) any ASD training. Eight months later the kids and I were reunited at a second stage women's shelter. My kids and I HAD to attend all programming, but the shelter would not make any ASD accomodations. For example, I asked for a class schedule so we could be prepared beforehand. Denied. The shelter mandated that my kids have an aide to participate in the groups, but I did not receive any funding for a community support aide because the group was not open to all members of the community. We moved out after six months. It has been 13 months, and the kids still fear and hate shelters and child welfare - places and agencies created to be SAFE!!!
Mark Twain once said, ‘A cat that sits on a hot stove lid won’t ever sit on a hot stove lid again. But it probably won’t sit on a cold stove lid either.’