Heather Clark over at Raising Rebel Souls listed some horrible things “autism professionals” say. This made me think. Professionals can be terribly ignorant about autism. I have only dealt with a few people who claimed to be autism specialists, but I have to agree even they can made insensitive or ignorant comments. Those who don’t know much about autism but claim to know enough to diagnose and support autistics, are actually the worst.
Having an additional diagnosis of borderline personality disorder doesn’t make it any easier. I met a person with BPD when I was admitted to the locked acute ward in the big city in 2007. She was forcibly discharged then readmited or threatened with forced discharge many times because, according to her treatment team, borderlines develop institutionalization behaviors if they’re admitted long-term. Quite truthfully, I am the only person diagnosed with BPD on my unit and I don’t know anyone who hasn’t developed institutionalization behaviors, most worse than mine.
It’s quite common for mental health professionals to clash with “difficult” patients on the right approach to care, and I for one am a “difficult” patient. I don’t care. I may not always make decisions or exhibit behavior that is seen as “normal”, but that doesn’t mean that professionals can look into my head and determine why I do the things I do and what consequence will truly help me. We’ve left the days of pure behaviorism and most people would consider it dehumanizing if it were applied to them. Psychiatric patients are no exception. Here, I will list a few things that professionals say about or to me that are quite frankly terrible.
1. “You have a personality disorder so you need to take responsibility for yourself.” Everyone needs to take responsibility for themself insofar as they can. That’s nothing to do with one’s diagnosis. I am told that people with schizophrenia need to be treated more directively. For instance, if I had had this diagnosis, I would’ve been asked to come back and possibly gotten my privileges taken away if I ran off the ward. Now, I’m “allowed” to wander for hours. I don’t see how my behavior is any less dangerous now that I have a diagnosis of BPD than if I had been diagnosed with schizophrenia.
2. “You are an adult (with BPD), you should be able to remember to take care of your personal hygiene.” Well, the fact that I’m an adult says nothing about my memory – which is often better in children than adults. Forgetting to take care of one’s personal hygiene may not be common in BPD, but it freaking well is common in autism. Besides, whether it is comon in people with my diagnosis, doesn’t change my abilities. My profile of abilities and difficulties should lead to a diagnosis, not vice versa.
3. “You can hold down a conversation, so you aren’t autistic.” They never realize how one-sided the conversations are, because that’s normal for a professional-client conversation. Besides, not being able to hold a conversation is but one criterion of autistic disorder and isn’t even in the criteria for Asperger’s.
4. “You are so verbally capable.” I am, sometimes. Then again, when I am not, this is seen as deliberate manipulation and I’m left without help to “think on it”.
5. “Do you want some PRN medication?” Then when I answer “Okay”, they say: “So you did know what you wanted.” No, I didn’t, or if I did, I couldn’t communicate it. Saying “Okay” to a suggestion is a lot easier than coming up with said suggestion myself.
6. “You have theory of mind. After all, you apologize when you did something wrong.” Correction: I apologize when I think I did something wrong. I apologize way more often than is truly needed and quite often don’t apologize when I don’t realize I did something wrong. That is then seen as deliberate rudeness.
These are generally comments made to me, taking into account my diagnoses. I won’t say that people with schizophrenia or bipolar disorder don’t get nasty comments thrown their way. I just can’t speak for them.
There are also comments that makke it sound as though the staff are generally uncaring. For example, one nurse often says: “Nurses are too expensive to do cleaning.” True, we need to be encouraged to clean up after dinner or coffee, but it has nothing to do with nurses’ salary.