Tag Archives: Home Support

My Experience with Professional Support for Autism #Write31Days

Yesterday’s post in #Write31Days was somewhat inspired by the day 3 question on the 30 Days of Autism Acceptance. The day 4 question asks about family and support. I may have to split this topic into several posts, as it is about both family and professional support. Today, I will talk about professional support.

I have been in the care system for years. As a child, I was in special education. As a teen, I didn’t get much in the way of professional support, but I sought it back out right after high school by going to a rehabilitation center for the blind. I was still undiagnosed at this point and I don’t think the staff had an idea that I could be autistic.

When I moved to an independence training home after the rehabilitaton program, the staff got to know me better and got the idea that I may “suffer from” autism. That was how the coordinator called it when she wrote my request for services for once I’d be living independently. I hated that word, “suffer”, but I’ll get to that at some later point.

Initially, the reason my staff wanted me to be assessed for autism was to confirm they were on the right track with their support approach. Obviously they weren’t, as they kept switching approaches and expecting little from me one day, then deciding all my challenging behaivor was attention-seeking and leaving me pretty much to my own rsources the next.

I was diagnosed with autism in March of 2007 and started meeting with a community psychiatric nurse (CPN) in training in April. Her supervisor was a bit of a weirdo, barely having read my records and making his own assumptions about what was going on with me. He was the first to mention impulse control disorder, which I got to be diagnosed with along with autism a year later.

The CPN-in-training herself was great. She gave me lots of coping tools, even though I didn’t fully understand the necessity at first. Unfortunately, as I was moving cities to go to univeristy, I had to stop seeing her three months later.

After being hospitalized, my interactions with nurses and treatment providers were quite varied. I had favorite and not-so-favorite nurses on each unit I stayed on. Particularly, my named nurse on the resocialization unit was great. So was the head nurse at that unit, who acted as a step-in named nurse to me too.

What I found the most helpful in a nurse, was if they took the time to really look at my needs rather than at protocols. That was clearly what I missed most at the last unit I stayed on. “Borderlines need to take responsibility,” a nurse – who later became one of my favoirte nurses at that unit – told me when I requested reminders to do my personal care tasks. I know that it wasn’t just that most staff didn’t believe I’m autistic, since they treated another patient with a more established autism diagnosis in a similarly dismissive way.

Now that I’m home, I think most of my staff do a good job of balancing protocols, which of course they have to adhere to, with meeting my needs. For example, my current CPN just reassured me this afternoon that she validates my need to be in a sensory group at day activities. She didn’t even say it’s not in line with my intelligence level.

My home support and day activities staff are great. My husband says it’s a regional thing. It isn’t, because the other day activity place I checked out and the mental health agency’s home support team, both of which are in the same city where I get my day activites, weren’t as accommodating at all.

Disappointment #WotW

This week was a lot less exciting than last week. It was really a big disappointment. That’s why I choose this as my word of the week.

On Monday, I had an okay day. I went to day activities and made a simple soap. There was only one activity staff so I had to be able to do the soaping mostly independently. The staff complimented me on the fact that I was able to be relatively independent indeed.

On Tuesday, I was supposed to leave for the potential new day activity place at 10AM. Since I got up really early, I wanted to go to day activities at my unit for a bit before the cab arrived. Unfortunately, the day activity room was closed because there was no staff available. Both of our regular staff are on vacation and apparently all subs had to work someplace else. An E-mal had been sent out notifying the nursing staff that the day activity room was closed, but only the nurses at the locked ward had received it. I was early, so my nurse went to morning report or something after dropping me off. Twenty minutes later, I panicked because no activity staff had shown up. A nurse from the locked unit came by and informed me that the day activity room was closed. Fortunately, someone was able to call my unit so that a nurse could come pick me up.

The cab arrived exactly on time and drove me to the supported employment building in the city where the day activity place is. Supported employment has largely been discontinued, so the building now houses other services, like the day activity place. The cab driver at first couldn’t find the entrance. Once he found it, I announced my arrival to the receptionist. It turned out the day activity place was in a faraway corner of the building and you had to walk through many corridors to get there. I was nearly run over by a supported employment person on a forklift truck. Those long corridors and the forklift truck gave me the impression that I would never be able to get from reception to the day activity room independently. Quite a bummer.

I arrived in a cafeteria where a large number of people were drinking coffee and chattering. I was seated by a day activity staff and we chatted some. A consumer got seated across the table from me and tried to chat me up. Not what I wanted that moment. Finally, my independent consumer advocate arrived and we got talking about what I expected out of day activities. I mentioned my new hobby of soap making, but we didn’t go into that. The staff member talked about ceramics and such. I couldn’t follow half the conversation by now, because I was overloaded.

We went to check out the actual arts room, which was quite crowded too. It was a disappointment. Next Tuesday, we’re going to have a look at a day activity place that’s part of the same organization but in another city. This place is supposed to be a little less overwhelming. I hope so.

My mother-in-law came to pick me up and offered to have lunch together. We ate a delicious chicken salad at what my husband later said was quite an expensive restaurant. My mother-in-law had gotten the idea of eating out there and I wasn’t there when she paid for us, so I won’t let myself be consumed with guilt. When she dropped me off at home, I gave her one of the goat’s milk soaps with honey that I’d made last week. She did allow me to use the pic she took, but I wasn’t able to get it off Facebook. I slept the entire afternoon.

On Weednesday, I had a meeting at home with a person from the mental health agency’s home support team. Two people came by and they hardly introduced themselves. That set the tone for the meeting. The whole meeting was one big disappointment. It turns out they can only offer two hours a week of home support and you don’t get to be able to phone someone if needed inbetween appointments. I can’t remember much else, except that they asked me how I see myself in two years’ time. I couldn’t answer that question right then and they talked about how it’s my life and I need to be able to get meaning out of it and stuff. As if I don’t know that.

Finally, they said that I might benefit from the assertive community treatment team helping me and then home support coming by twice a week to unburden assertive community treatment. I’m not sure I want anything to do with this home support team at all, given how they treated me in this meeting. They were truly all patronizing and yet telling me I need to be able to do this and that and whatever. Since my current treatment provider is already trying to get me signed up for the assertive community treatment team, I’m not interfering with that. When the people left, I was so disappointed I had destructive urges. Thankfully, I got to go back to the institution that afternoon.

Thursday and Friday went by in a blur. I only went to day activities for a short while on Thursday, because a male sub who didn’t know stuff was there. My named nurse sent an E-mail to my psychologist asking her to schedule an appointment with me. I’d done the same early that week, but still my psychologist replied that if I wanted an appointment, I could contact her. Go figure.

Altogether, this whole week was filled with smaller and bigger disappointments. I am really hoping next week is better.

The Reading Residence