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.