It’s been one of those days, one of those weeks. Where I’m frustrated that I don’t have an ASD diagnosis because I didn’t fit the criteria as a kid. It’s been fucking with my functioning this week. I’ve messed up a few social cues. And I’m curious. I have some Aspergers followers out there or people on the Spectrum that “cope” and appear normal enough. I don’t mean this to come off rude, I know they took aspergers out of the DSM5 thats why I want to cover aspergers and the spectrum but I’m mostly referring to more of the higher functioning people who for lack of a better word pass as normal most time.
That’s me. And I know the goal after you get an ASD diagnosis is therapy to help cope with daily living and be able to live productively, get social skills, don’t have meltdowns, learn to deal with sensory issues, etc. etc. I just don’t understand that if I was forced to do this as a kid because of a chaotic home environment how I can’t have the diagnosis. I essentially learned most the skills they try to teach out of necessity. Now on my own, I’ve regressed a bit plus I’m managing a bunch of other shit so honestly I don’t have the energy for all that normative passing stuff. But I’m still upset that the doctor won’t give me the diagnosis because as a child I didn’t meet the criteria till i was 11 or so.
Do you sometimes feel illegitimate or your diagnosis means less than because it isn’t paired with the typical diagnosis. Than your case manager tells you that you weren’t washing your hair just to act out and you know distinctly it was because of the sensory issues. If it was to act out, why would you allow family members to wash it in the sink. Would those be the people you were acting out against?
I feel without the comirbid ASD diagnosis my SPD is less legitimate especially as an adult. I know there are few adults with SPD. And I know I meet the symptoms and criteria. I just don’t have melt downs, I do shut down. I’ve found coping strategies. And I feel I have to ignore my issues and sensitivities because people will now say they are less legitimate. Family always has, except for knife sharpening; cuz they can see how that would bother almost anyone.
Another day in the life of a complexly mentally ill person.
Today was the first Official day of the convention although there was an extra track yesterday about first episode psychosis that was rather interesting. The convention this year is in Denver, Colorado last year it was in San Fransico, California. I live in California so last year me and mom drove to the conference and while she didn’t go, she stayed in the hotel with me. This year I flew by myself and am staying by myself for 4 nights. The night before I chickened out, was really physically sick with stomach issues, and if my dad wasn’t home would have just not gone. But he’d ridicule me and not understand so I sucked it up and went on little sleep and little faith.
The first day was just registering, checking in to hotel, the one track, and I went to sleep early. I liked the talk. I was proud I was able to fly, get a cab, and check in to the hotel without having a melt down. I went to bed as soon as the program was over and my sleep was weird with bad dreams. There’s no bath here and I forgot my hairbrush. So I just called the front desk (hardest thing so far) and asked for a comb) I combed my hair and put on my hat. The other hotel has a hair brush I bought so I’ll try to shower tomorrow.
The one good talk yesterday was about getting people with psychosis to engage in treatment. It talked about the negative symptoms of those with psychotic disorders like: lack of motivation, isolation, lack of interest in things, flat affect, monotone/don’t respond much. Yet there is still the need to belong and the desire for connection. Sometimes the problem goes to we can’t do what we use to do. Example when I had to stop working I never talked to old boss till years after though we were very good friends and went to the movies a lot. There were a lot of things I couldn’t do at points of illness, like attend school or social events so I just lost everything related to that. When nothing feels great you stop trying because you don’t expect it to and why put in the effort. We prefer hobbies to people and don’t engage in the community. Sometimes we are protecting ourselves but sometimes it holds us back. In order to help these negative symptoms which have underlying problems such as defeatist beliefs you need to let the individual set the goals for therapy. No ones life’s goals. Is to get up and shower. To make their bed. To take their Meds. As the speaker humoursly suggested maybe your ambition is to live independently with a soda machine in your apartment?
- Then ambitions are broken down. Steps are concrete.
- Action towards the goal is the therapy target
- Obstacles are addressed as they impede action
- Conceptualization is the key to the obstacles
- Achieving the ambitions reinforces the curative beliefs
That was yesterday. Today talked about policy and government. A good workshop on peer workers though there were two VOCAL audience members who should’ve been kept in better check. I’ll scan the awesome resource document when I get home. I also attended another sessions on first episode psychosis programs; there was a lot of that at the NAMU National Convention 2015, so no real new info.
I hope I sleep better tonight. I can take a quick shower in the morning without my sensory issues going crazy. And noticing my interactions with people vs the rest of the convention the more likely I fall on the ASD spectrum. I’ve talked to one person since I got here. Most have depression, anxiety, bipolar, schizophrenia, PTSD, or are a family member of someone who does. There are board members and stuff too but even them usually have some relation.