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.
Today is World Mental Health Day. If you had told me a few years ago that I would be moved out from my parents house, going to a 4 year university and hadn’t been in the hospital for almost 2 years I would have thought you had to be kidding me. I am amazed at the progress I have made in the last two years. With four official diagnoses, 8 prescription medications, and a few appointments a month I’ve managed to stay stable for the first time in 10 years. My counseling appointments are decreasing from every week to every two weeks or sometimes three. I have few self harming urges and while the suicidal thoughts still come and go; I don’t have the urge to act on them like I use to and tend not to ruminate. I used to think that I would be trapped in my lower state of functioning for the rest of my life, I hung on mostly for other people and out of guilt. Now (most times) I actually look forward to the future. I anticipate flare ups and relapses, I know I have acute chronic illnesses. But I am enjoying the moment and success I have right now.
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.
So I had to come clean to my parents about the possible Autistic Spectrum Diagnosis (ASD) Evaluation. I had my mom fill out a form the specialist gave me to fill out for my primary care giver or parent. She filled out some and my sister looked over it and thought it was insufficient as my mom was looking through “rose tinted goggles” so she changed some answers and I had her fill out other sections where I knew she knew the answers, aka not the birth-3 years old. The specialist called the day before I was suppose to have the appointment and need to ask my mom some questions for clarification. I thought “oh no” and now I gotta tell her the truth. So I told her about my most recent Sensory Processing Disorder and how I’ve always had the social awkwardness that now seems a little more than just social anxiety and paired with my poor motor skills they think I might be on the Autistic Spectrum. I also told her when the specialist called not to answer questions with what she thinks I can do but with what I currently do do. He just asked about 10 questions about when I was a baby and a toddler and now I have to wait a week and a half for results! I wish this process went faster!
Yesterday was the NAMI Walk here is a picture of my 2016 Team:
Biggest team yet with 23 participants, 4 of which were children and 2 of which were dogs. It rained so it was a good turnout of my 31 people registered. I met my fund raising goal of $1,500. The highest amount I’ve raised in all 4 years too.
My ASD (Autistic Spectrum Disorder) Evaluation is set for May 24th so we’ll see what happens I also have an appointment with the therapist that day and it’s a week after school ended. Me and my case manager have decided to go to meetings once every two weeks because I’m doing good but that might chance with the loss of structure from summer and some realizations I had when talking with some Autistic friends. I’m set to receive to more AAs this semester, Associate Degrees or 2 years degrees one in Foreign Languages and the other in LGBT studies (Lesbian, Gay, Bisexual and Transgender). I’m not going to either commencement ceremony but for my LGBT studies one I am going to a more informal Rainbow Graduation and 20 somethings friend is going. I only invited 3 people, my sister and family friend couldn’t go both are traveling.
I signed my commitment thing to go to UC Davis and will be going to their transfer day this Friday and touring student housing and making my decision when I get home I plan on filling out the forms and putting my deposit down for student housing. My financial aid finally went through and I’m relieved I won’t be paying that much for college so if my unpredictable parents do something stupid I’m still okay.
Things are good but I’m exhausted from yesterday.
I have reached the $1,000 mark and have almost raised as much as I did last year, which was $1,065. My goal this year is $1,500 and I have a week left to reach my goal. I was hoping my sister and brother-in-law were going to have their garage sale before the NAMI Walk and they said they’d donate some of the money to my walk but that doesn’t look like it’s going to happen. I’m still happy I raised at least one thousand. I would like to brag last years even if I don’t meet this years goal. My team this year will be much bigger about 30 people compared to 14 last year. So over all I’m doing well. If you’d like to help me reach my goal if greatly appreciate it, every little amount counts.
This is a picture of my team shirt for the NAMI Walk this year. I have the green mental illness awareness ribbon with hope written inside. I’m finally seeing a lot of hope in my life. Over a year and a half without a hospitalization. Transferring to UC Davis in the fall and moving out. Getting accepted to all the other colleges I applied to was validation and definitely help my self esteem. I’m growing up and seeing a future. There is hope.