Autism – Page 15 – A Multitude of Musings

This is Clarissa, but a lot of us are near. I just had the meeting with the Center for Consultation and Expertise (CCE) consultant this afternoon. The CCE is an organization that helps in complex care cases where a client with a disability or illness gets stuck due to “severe problem behavior” and their quality of life is at risk. We originally started this consultation last May because we had to leave our current day activities due to our challenging behavior and were stuck in the process of finding a new place.

Now that we’ll start on our new place next week, we decided to go ahead with the consultation anyway because we still lack perspective in many respects. For one thing, we’re struggling to live independently with our husband. For another, we’re unsure as to whether the treatment we receive from the mental heath team is really the best for us. We do dialectical behavior therapy because it was recommended to us, but we really struggle to apply its skills in daily life.

One thing in this respect which the consultant said, was that maybe all this treatment isn’t working because we talk too much and do too little. Or something like that. She didn’t mean that we don’t move our arse. What she said was, our treatment is based on a borderline personality disorder diagnosis while in reality our autism, which can’t be treated, is more relevant. As such, we might do better living our life with enough support rather than constantly needing treatment.

Wow. This had us thinking. Could we really live our life without a psychiatrist and other mental health professionals on board? Sounds really dependent as I write it now, as if we depend on our mental health team, whom we mostly see every other week, to keep us functioning. But the truth is, do we really need them?

Most of us are so excited at the prospect of just being allowed to be ourselves. As it is now, we need some mental health staff for support when we need to talk and our support worker isn’t around. However, it doesn’t really take a mental health degree to help us in most of these cases. Other than that, we go to the obligatory DBT sessions with our nurse practitioner and to movement therapy, neither of which we feel is terribly effective and both of which are temporary.

I will have to give it some thought. We really most likely need support for the rest of our life, and that’s okay. Our need for an on-call support worker (now that’s a psychiatric hospital nurse) will most likely not vanish if we finish DBT. And yet our “prescription phone call” service has to be renewed every six months. If my husband and I move closer to a supported housing facility, and/or we get access to a non-psychiatric support phone line, wouldn’t that be far better? I’ll really have to discuss this with the consultant when she visits our home on August 14.

Today is a good day so far. I’m slightly less energetic and motivated than I was over the week-end, but I wouldn’t say I’m depressed either. It feels a little strange having started my last week at my curren day activities. Next week, I start at a new place, thankfully with the same care organization.

I started at my current day activities over a year ago fresh out of the mental institution. I didn’t know it back then, but the manager had gotten the impression that it was just an emergency placement, so I wouldn’t be there long-term. It’s a place for people with intellectual disabilities, which I don’t have. As such, I assume part of the reason I was eventually asked to find another place, is that they need my spot for someone who does have an intellectual disability. The staff don’t say so of course. They say it’s better for me to find another place. I hope that my new place will
prove to be better indeed.

The new place is also for people with intellectual disabilities. They are mostly severely intellectually disabled people at the gorup I will be attending, but they are at least partly capable of their own personal care. On the group I go to now, the clients are all profoundly intellectually disabled and need considerable help with their personal care. Two of my fellow clients need one-on-one support a lot of the time.

Why, you may ask, did I end up in this group? Well, I am not intellectually disabled, but the care approach to developmental disabilities suits me much better than the one for mental illness. I started day activities last year at a group for relatively capable people with mild intellectual disabilities. They do industrial activities there. This definitely wasn’t my type of activity. Also, the constant chatter that I couldn’t make sense of, was overloading me. So I often retreated into the sensory room. I prefer sensory activities to industrial-type work anyway. The center psychologist was consulted because my behavior was getting out of hand at the industrial group and she recommended I be transferred to the sensory group, which is the one I attend now.

There, I did well for about six months. Then, my behavior spiraled out of control again when several new clients joined my group and as a result there were lots of changes. After an incident in which I self-harmed, the manager decided I’d need to leave this place. Thankfully, he gave me time to find another place. The new place is with the same care organization but in a different town.

At the new place, the other clients are slightly more independent than at my current place. Also, the staff are more used to dealing with challenging behavior. It is pretty crowded and noisy, but when I’m overloaded, I’m allowed to retreat into the sensory room. I spent a few days at the new place to see if I’d like it and I did. As such, they’re more prepared than my old place. After all, the staff there only got a bit of information about me from my institution psychologist, most of which I reckon was incorrect. After all, said psychologist felt I’m dependent rather than autistic and as a result exaggerate my sensory issues in order to elicit care. Well, I’m not.