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More on Autism

11 Apr

So I’ve mentioned before that both my case manager and the therapist wanted to have me evaluated to see if I fell on the Autistic Spectrum.  This was due to a variety of issues including my Sensory Processing Disorder, issues with eye contact, problems with socializing, and falling a lot.  With Kaiser’s evaluation system that took like 3 months to go through I was found not to have an ASD because I did not present symptoms as an infant, though I met enough criteria currently and had since a child.  This has been upsetting me a lot.  Transferring to UC Davis, I still haven’t made any connections and while I don’t need to have a lot of friends and to be honest am not interested in having a lot of friends, I would like to have one or two.  I never seem to say the right thing and I can’t figure out people.  My case manager went to a training about a week ago now and she said a lot of females on the spectrum are misdiagnosed with Borderline Personality Disorder or Bipolar because Autism is about not being able to control your emotions.  I have both.  She said if it’s any something she thinks I’m somewhere on the spectrum and that they need to train Kaiser doctors better.

I know several autistic young adults.  I found this on the internet the other day:

What do you think the most common cause of premature death is among adults of typical or high intelligence with autism spectrum disorders? It’s suicide.

A large study was recently published in the British Journal of Psychiatry that examined the risk of death among the 27,122 persons diagnosed with autism spectrum disorders in Sweden when compared to age-matched controls. One significant finding from the study is that on average, persons with autism die sixteen years sooner than would be anticipated.  The finding we’ll examine more closely is that adults with autism and no intellectual disability are over nine times more likely to commit suicide when compared to their age-matched peers. Unlike the general population, in which men are significantly more likely to commit suicide than women, women with autism were at higher risk of suicide in this study than men.

Last month’s study isn’t the only signal that persons with autism are especially vulnerable to suicide.

  • study of 10-14 year-olds with autism reported that 70% of kids with autism also had at least one mental health disorder such as anxiety, ADHD or depression, and 41% had at least two comorbid mental health disorders. Of those with ADHD, 84% received a second comorbid diagnosis.
  • Kids with autism were 28 times more likely to experience suicidal ideation than age-matched peers without autism in this study.
  • In a study of 374 adults with Asperger’s Disorder, 66% of 367 respondents self-reported suicidal ideation, 127 (35%) of 365 respondents self-reported plans or attempts at suicide, and 116 (31%) of 368 respondents self-reported depression. Adults with Asperger’s syndrome were nearly ten times as likely to report lifetime experience of suicidal ideation than individuals from a general UK population sample, and more prone to suicidal ideation than people with one, two, or more medical illnesses, or people with psychotic illness.

Why might suicide represent such an enormous problem among high-functioning persons with autism spectrum disorders?

They’re more likely to experience social isolation and lack social supports. In the fall of 2014, we shared this anonymous post from a college student describing her experience of trying to attend church as a person with autism. Imagine how the challenges she describes would impact her day to day life outside of church.

High-functioning kids with autism are significantly more likely to become victims of bullying when compared to their peers with autism and intellectual disability. It’s become socially inappropriate to ridicule persons with an obvious disability…less so when the disability isn’t so obvious.

They’re more likely to experience difficulties with executive functioning that may translate into a greater risk of acting upon suicidal impulses, more difficulty employing effective problem-solving skills and more difficulty self-regulating emotions. Learn more here about the challenges persons face with executive functioning challenges.

Their propensity to become very fixated on specific thoughts or ideas may intensify suicidal thoughts, or result in more difficulty letting go of feelings of hopelessness when they occur.

http://www.keyministry.org/church4everychild/2017/4/4/the-suicide-epidemic-among-high-functioning-persons-with-autism

PS I’ve been more suicidal with less friendship and more lonely lately.

Adults on the Autistic Spectrum

2 Feb

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.

 

Thoughts?

World Mental Health Day 2016

10 Oct

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 thouworld-mental-health-day-10-october-earth-globe-in-handsght 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.

SPD and moving away

24 Sep

When I talk about my diagnoses, I always say my primary are schizoaffective and BPD because they affect my life the most my other two currently diagnosed are PTSD and SPD.  Most people don’t even know what SPD is and although I meet all the criteria for PTSD we don’t know my trauma, weird much.

 

Moving out of my parents house for the first time at age 33 has set off some sensory issues this week.  I took a shower for the first time in nearly two years.  I HATE SHOWERS! One of my sensory issues revolves around my hands getting wet, and wet hands touching things, at home I had a bath tub.  While in inpatient setting I was forced to take a shower so it is not like I have never taken a shower before but the longest I’ve been there is 13 days.  I will live in this place a year.  In a week period I got away with taking one shower and driving home to take one bath, but I know this is not a long term solution.  My hair was very dirty.  I can’t use dry shampoo because the smell also bothers me.  I got use to washing my hair in the bath tub with my hands so I assume I will get use to showers but man this is torture at first.  Lil sis has some sensory issues too, but is anti-psychiatry and thus undiagnosed and I am unsure if she meets criteria but gave me the tip of bringing a gym towel in the shower with me to wrap my hands in and keep them dry until I need to wash my hair then throw it out quick and wash my hair.  That won’t help issues like water pressure but it’s a start.

 

Last night I went to an event with my roommates on campus, I ended up taking a separate car because I wasn’t done with dinner by the time they left.  I kinda already feel a little left out by them, but maybe it’s my paranoia.  I was good for the first hour and a half and then the live band music got too loud for my sensory issues and I had to leave.  I felt lame and embarrassed.  I don’t really know how to explain it to my roommates, if I should, and this is really just the tip of the iceberg in regards to my mental illness.  All 5 of my roommates are either psychology or sociology students and one is taking abnormal psych this semester.  I mentioned my sensory processing disorder early on and of course no one knew what it was in adults.  When I described it was a common co-occuring disorder in children with autism like kids who have difficulties with certain textures of clothes and have tags cut off t-shirts a couple nodded. It was very simple.  So it’s not like they have no introduction.

Illegitimate 

29 Jul

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.

More waiting

14 Jul

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!

All over the place

30 Jun

My mood has kinda been all over the place lately and mostly reliant on other people or me level of boredom.  Which isn’t healthy.  Sometimes it’s not.  I’m kinda excited about starting summer school and the whole transition of moving out and transferring to UC Davis, but I try not to think about it to much because I don’t want to get overwhelmed.  Since I’m only taking one class this summer and it doesn’t start till August 1st, I was thinking about delving into some help type things I’ve been avoiding like maybe looking into talking about gender identity (though it isn’t bothering me too much right now) or looking into ACOA groups, again it’s not bothering me too much.  I guess things don’t have to be really difficult at the time to bother you, if you still know they are an issue.  I know when school starts up, it will be too crazy.  I’m interested to see what this ASD eval has to say.  I was talking to 20 something friend today about relationships and meeting people and how I don’t have skills and sometimes no interest and he was talking about like an ASD group or something.  I don’t know if that exists and technically I don’t know if I have a diagnosis or will.  I know in the past from being friends with others with BPD it was a mistake and caused a lot of drama.  I know I was trying not to look up info on ASD until I heard from the doctors, but I wanted to know what the new DSM5 had to say about it as I heard they were doing away with Aspergers and that’s most likely what I think I would be diagnosed with.  I was not surprised to find I met most the criteria but then that it said it had to be ruled out for schizophrenia, so I wonder if they will roll all the “social functioning” issues I have under the schizo in schizoaffective and then have the sensory issues in the Sensory Processing Disorder and just kind of ignore the other weird quirks like delayed sexuality, poor motor skills, my fixations, routines and problems with change.  So many questions and probably few will get answered.

Out with it

22 Jun

Why I asked/my case manager pushed for the Autistic Spectrum Disorder evaluation:

  • I was just in October of 2015 diagnosed with Sensory Processing Disorder, even though I have had sensory issues that have made functioning on different levels difficult for as long as I can remember.
  • Problems with eye-contact
  • Don’t shake hands or high 5 because I don’t like people touching the palms of my hands; I just kinda stand there if I don’t know them.  Backwards high 5 people I do know, and have recently became more of a hugger
  • Clumsiness/ motor skills; I fall a lot, and my case manager says I walk funny
  • Bad communication skills in general
  • Awkward social skills
  • Most my life have had one or two friends except high school
  • Will not use the phone, usually have my mom pretend to be me and make calls for me
  • Very small group of things I like to eat and places I will eat those food at and thats all I eat over and over again, don’t try new things.
  • Won’t eat yogurt, jello, cottage cheese, or things with a similar consistency (SPD)
  • Wearing same clothes, like smell and worn-out-ness of already worn clothes.
  • Won’t wear certain fabrics, closed toe shoes, socks, or gloves unless necessary (SPD)
  • Won’t wash, lotion, antibacterial soap, sunscreen or let most liquid touch my lands; occasionally lick them when they feel dry (SPD)
  • Loud music (like at clubs/bars) makes my eyes blink and head spin (SPD)
  • Flashing lights do the same (SPD)

A Whole Lot of Stuff

8 May

Yesterday was the NAMI Walk here is a picture of my 2016 Team:

NAMI 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.

goal met!

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.

Fundraising update

28 Apr


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. 

http://www.namiwalks.org/index.cfm?fuseaction=donorDrive.participant&participantID=1143