Crazy is not a term therapists and clinicians want their clients to use. Yet that is the very term I used to describe myself and immediate family. The usual response went something like this "that is a negative term and we prefer not to use it". The utterance was not intended to be judgmental. It was used to describe a feeling and a behavior. As a child my mother would say "you're acting crazy!" when I had a meltdown. As a teen it was revised to "You are crazy!" Yes to the outside world crying, rocking and hitting yourself for 20-30 minutes is unacceptable no matter how filled with frustration and anxiety you are. And by the time the feeling of relief set in and the calm behavior returned it was too late, the crazy label was firmly in place!
At 22 I was a young alcoholic in deep depression with daily thoughts of suicide. A parent to a toddler who most certainly deserved me gone, still I sought recovery. It took courage to seek help as alcohol and prescription sedatives were the only thing that kept the fear and pain away. A chance for recovery presented itself, yet if that failed, death was still an available option. I was directed to a 12 step meeting not sure what to expect. I had created a very small world with few people in it. All that was about to change.
The room was full. Two seats away sat a woman who lived in my town. After the meeting was over, I held my breath walked over and said hello. That night she took me under her wing. Shaking and just a few days without anything in my system I became the new kid on the block. Many people, all of whom quoted phrases and asked questions, began giving instructions sometimes gently, others with military like authority. The first thing that was strongly recommended was an inpatient detox and rehab. That was not even an option. Not drinking and talking to these people seemed a fair start. Yet all said you "need" to go to rehab. Panic set in.
Throughout my 22 years I desperately wanted people to accept me. The thought that rejection was possible and I might be turned away seemed horrific. This was my last stop. Still I knew all to well how to be alone without hope and rejection was familiar. The anxiety surrounding being locked up was greater than the need for acceptance. I stated "Maybe you needed to go but I am not going!" Most assumed I was just a defiant alcoholic who was exercising a lack of willingness to go to any lengths for recovery. That was not so. It would take 24 more years to uncover the truth. An ASD diagnosis was waiting, but the journey would be long and much more difficult without that information.
The idea that my deep, dark, depression was due to alcohol gave me a sliver of hope. If that were true, and I doubted it, maybe life could be something better and perhaps my son would have the mother he deserved. I believed that I was a brand of crazy, once diagnosed, that would get locked up indefinitely. No team of therapists and psychologists would get that close a look. And never behind a facility door that quite possibly would remain shut. If that were to happen the alcohol, my only coping mechanism, would be too far out of reach. Dry and incurably mentally ill was a thought I could not live with.
Initial recovery was rocky. Daily anxiety along with frequent panic attacks were the norm. Sitting for more than 40 minutes in any setting was impossible. I felt as if I wanted to scream if I sat too long. I believed that I was an alcoholic without question but was certain the untreatable crazy diagnosis would eventually emerge and all hell would break loose. Maybe I could find out what it was and there would be a type of treatment someday. Not a cure, just a conditioning to minimize the thoughts and acting out. The quest took the form of different therapy groups including adult children of alcoholic support, anxiety groups, CBT among others. Maybe I was bi-polar or ADHD or slightly schizophrenic. Nothing really seemed to fit the psychiatric definition and exactly mimic the behaviors. I kept looking and attempting to do what was asked of me. Not as well as my counterparts but with dedication, conviction and as if my life depended on it. Which it did.
Post diagnosis I realized individuals with ASD are expected to work and seek support in the same way others do, and that was a recipe for failure. I understood, finally. Many times when asked or expected to participate I would have to say no. Then I was told "you can't say no". This reinforced feelings of defectiveness. Too much energy was used trying to do that which was easy for most and exhausting for people like myself. Emerging understanding of adults with ASD must include seeking the holes in therapy standards. A successful recovery will only occur when practitioners rethink analysis, approach, therapy goals and relapse prevention. I am finally cleared of the crazy label and can maintain my recovery as I see fit. Now I can tailor a successful path for my future and assist others on the spectrum in pursuit of a substance free life.
Thursday, September 5, 2013
Wednesday, August 21, 2013
Can someone with ASD successfully recover from substance abuse? YES!
My last drink was on March 18, 1984 at age 22 in the throws of PTSD and undiagnosed Asperger's. The 80's were a time of explosive changes in recovery. We were shedding our shame, rehabs were popping up faster than McDonald's in third world countries and many proclaimed they were either and adult child of an alcoholic or diagnosed with bipolar disorder. Rehabs changed things. Suddenly people were trying to hug you and tell you they loved you! Hugs were uncomfortable from people I cared about so getting them from someone I barely knew was intolerable. And I had a really hard time with people saying "if no one told you they loved you today, I love you!" The hair on the back of my neck stood up.
Still the search continued for the right combination of support and therapy. I fully applied myself to every therapy session I attended in the pursuit of ending a pretty dark existence. I also believed to just sit in a chair and complain to a complete stranger was a waste time. Scared, angry and uncertain I had enough people seem to care about me that I decided to invest in myself. If something didn't fit one way I tried other approaches to make it work. Often it felt like carrying a 50 pound weight on my back. Not until my ASD diagnosis did the puzzle pieces effortlessly slide together to become a clear picture.
In my diligence I acquired very valuable information on recovery strategies. Strategies that will work for someone with ASD and uncovered some standard therapeutic methods which will set us up for failure. Giving one of us the wrong tools or anyone with a substance abuse issue is potentially deadly. How I wish my therapist knew that my sensory issues would be assaulted in a bright or loud meeting. Insisting on my networking daily with other alcoholics would exhaust me and reinforce my thoughts of defectiveness. Still my journey gave me many tools and I use them. Was it easy? Absolutely not! Now I know it was harder to get those tools and even more of a struggle when watching others use them so easily.
In 2008, when I was sure I was on the spectrum, I began seeing a therapist who worked in a school for children with Autism. In 2010 I went to Manhattan where my diagnosis was formalized. The diagnostic process was painless. Acceptance was going to be a lot more difficult. Thoughts and guilt that my son might have been better off with another mother crept in. Later, I would understand that I was the best person for the job. There was a lot of reading both mainstream and researched material, attendance at AS support groups live and online, speaking to individuals like myself. I began to see a trend of substance abuse and also met several Autistics in long term recovery. How could so many of us be in recovery or questioned the need for abstinence? Something was going on.
During one of my early morning research sessions a 2011 Japanese psychiatric study emerged. The participants included 102 men attempting substance abuse recovery and all were administered the Autism Quotient Test. The group who scored 30-50 had higher rates of recovery after 2 years than the participants with lower scores. Relapse was more frequent the lowest group, those who scored 0-15. One study doesn't make it so but it does give hope. I suspect with all the anxiety we experience there are many more Autistics abusing substances than in the general population. BUT it also seems that we have a greater opportunity for recovery and a real chance to mold happy, healthy lives.
Still the search continued for the right combination of support and therapy. I fully applied myself to every therapy session I attended in the pursuit of ending a pretty dark existence. I also believed to just sit in a chair and complain to a complete stranger was a waste time. Scared, angry and uncertain I had enough people seem to care about me that I decided to invest in myself. If something didn't fit one way I tried other approaches to make it work. Often it felt like carrying a 50 pound weight on my back. Not until my ASD diagnosis did the puzzle pieces effortlessly slide together to become a clear picture.
In my diligence I acquired very valuable information on recovery strategies. Strategies that will work for someone with ASD and uncovered some standard therapeutic methods which will set us up for failure. Giving one of us the wrong tools or anyone with a substance abuse issue is potentially deadly. How I wish my therapist knew that my sensory issues would be assaulted in a bright or loud meeting. Insisting on my networking daily with other alcoholics would exhaust me and reinforce my thoughts of defectiveness. Still my journey gave me many tools and I use them. Was it easy? Absolutely not! Now I know it was harder to get those tools and even more of a struggle when watching others use them so easily.
In 2008, when I was sure I was on the spectrum, I began seeing a therapist who worked in a school for children with Autism. In 2010 I went to Manhattan where my diagnosis was formalized. The diagnostic process was painless. Acceptance was going to be a lot more difficult. Thoughts and guilt that my son might have been better off with another mother crept in. Later, I would understand that I was the best person for the job. There was a lot of reading both mainstream and researched material, attendance at AS support groups live and online, speaking to individuals like myself. I began to see a trend of substance abuse and also met several Autistics in long term recovery. How could so many of us be in recovery or questioned the need for abstinence? Something was going on.
During one of my early morning research sessions a 2011 Japanese psychiatric study emerged. The participants included 102 men attempting substance abuse recovery and all were administered the Autism Quotient Test. The group who scored 30-50 had higher rates of recovery after 2 years than the participants with lower scores. Relapse was more frequent the lowest group, those who scored 0-15. One study doesn't make it so but it does give hope. I suspect with all the anxiety we experience there are many more Autistics abusing substances than in the general population. BUT it also seems that we have a greater opportunity for recovery and a real chance to mold happy, healthy lives.
Tuesday, August 20, 2013
Self medicating through alcohol abuse
I was 28 years in recovery before a close friend and I discussed our drinking in any detail. After about an hour, coffee in hand, she simply turned and exclaimed "Oh you drank to self medicate."
For a few seconds, which seemed like several minutes, I digested the statement and responded "Oh yes!" I don't think I ever contemplated the why's of my drinking. I am not sure they mattered at the time or after. It was enough that I knew then and now that I am an alcoholic.
Why certainly wasn't going to change the fact that I had a disease which could kill me. In fact my energy was best served in staying away from a drink, creating a healthy positive attitude and building a life away from that which was. I heard others say they could "no longer drink successfully" my logic told me that probably isn't a healthy goal. The fact that when drinking I had no off switch was enough to keep in the front of my mind.
But that statement! Those words! Self medicated kept creeping into my mind. Why was this so important now. Why since I have a formal diagnosis was it necessary to think about that. Was I attempting to minimize my alcoholism and put the emphasis on my ASD diagnosis? It took some time to process. I was afraid. Before I began my sober journey I attempted therapy in the hope that I was just crazy. The idea of being mentally ill was much more palatable than an alcoholic. Not because I looked down on the alcoholic label, as many do, but because if you are crazy you can still drink.
After a time it was alright that I had self medicated. I was able to see how my fear manifested itself. I began to look back at how I reacted in certain situations and then tried to remember how it felt. I was labeled "extremely shy" in school from age 5 on. Shy, not filled with anxiety, just cute and shy. I was afraid to talk. I remember if I wanted to answer the teacher's question I would look around the room and see who had their hand raised before I would raise mine. I didn't want to be the only one. No surprise that at my grandparents 40th wedding anniversary, at age 10, I would find the one thing that would help me feel relaxed for the first time in my life.
For a few seconds, which seemed like several minutes, I digested the statement and responded "Oh yes!" I don't think I ever contemplated the why's of my drinking. I am not sure they mattered at the time or after. It was enough that I knew then and now that I am an alcoholic.
Why certainly wasn't going to change the fact that I had a disease which could kill me. In fact my energy was best served in staying away from a drink, creating a healthy positive attitude and building a life away from that which was. I heard others say they could "no longer drink successfully" my logic told me that probably isn't a healthy goal. The fact that when drinking I had no off switch was enough to keep in the front of my mind.
But that statement! Those words! Self medicated kept creeping into my mind. Why was this so important now. Why since I have a formal diagnosis was it necessary to think about that. Was I attempting to minimize my alcoholism and put the emphasis on my ASD diagnosis? It took some time to process. I was afraid. Before I began my sober journey I attempted therapy in the hope that I was just crazy. The idea of being mentally ill was much more palatable than an alcoholic. Not because I looked down on the alcoholic label, as many do, but because if you are crazy you can still drink.
After a time it was alright that I had self medicated. I was able to see how my fear manifested itself. I began to look back at how I reacted in certain situations and then tried to remember how it felt. I was labeled "extremely shy" in school from age 5 on. Shy, not filled with anxiety, just cute and shy. I was afraid to talk. I remember if I wanted to answer the teacher's question I would look around the room and see who had their hand raised before I would raise mine. I didn't want to be the only one. No surprise that at my grandparents 40th wedding anniversary, at age 10, I would find the one thing that would help me feel relaxed for the first time in my life.
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