Adult Asperger's Autism Spectrum Disorder Journey
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Chapter 4 – Page 95 – “After self-identification as a person with ASD, it’s important to be careful about in whom we confide. The widespread ignorance and misunderstanding surrounding autism and ASD cannot be overemphasized.”
From the wonderful Philip Wylie book: “Very Late Diagnosis of Asperger Syndrome (Autism Spectrum Disorder) - How Seeking a Diagnosis in Adulthood Can Change Your Life.” It’s a nice read for any Aspie who is diagnosed later in life.
After my diagnosis, I was elated and started telling everyone that I know. I didn’t mind at all. My psychologist also cautioned me to be somewhat selective about who I tell. I wanted to go to my employer and let them know formally and officially of the diagnosis due to some accommodations I need due to my condition. ASD and Asperger’s is covered in the ADA (Americans with Disabilities Act). An employee can apply for an accommodation. I have one that I need which I will not describe here. My doctor told me to think before I tell my employer because they also have the right not to accommodate and self-revealing this condition might cause me and issue with employment. So I listened and did not do anything with my employer – yet. I still tell the people that I work with that I am on the spectrum so that they understand how my wiring works.
Chapter 2 – Page 53 – “Diagnosis of ASD and accompanying support enables autistic individuals to guard themselves against abuse. Unfortunately, late-diagnosed autistic adults are likely to have internalized over many years the negative feelings caused by abuse, misunderstandings, betrayals, and injustice and this causes anger to build up.”
From the wonderful Philip Wylie book: “Very Late Diagnosis of Asperger Syndrome (Autism Spectrum Disorder) - How Seeking a Diagnosis in Adulthood Can Change Your Life.” It’s a nice read for any Aspie who is diagnosed later in life.
I certainly have internalized a good amount of abuse. I was misunderstood and abused as a kid, abused throughout my school years, and abused as an adult. I was always very sensitive to it and it made me very angry and depressed most of the time. I went to doctors for years and years for depression and being “different”. Now that I’ve been diagnosed and am on the spectrum, so many things are so much clearer and I’m able to get past all of those things in the past and move on. I now know why there were misunderstandings. I then went through a period where I was depressed because I was not diagnosed earlier in my life just as Philip Wylie indicated in his book. I’m over that mostly as well now.
Chapter 4 – Page 94 – “After we understand our neurological condition, we may realize that many of our current or previous friends, acquaintances, and even heroes have ASD too. … I was able to identify the path of autism in my family, so I realized that I was not alone in my family with this condition.”
From the wonderful Philip Wylie book: “Very Late Diagnosis of Asperger Syndrome (Autism Spectrum Disorder) - How Seeking a Diagnosis in Adulthood Can Change Your Life.” It’s a nice read for any Aspie who is diagnosed later in life.
My sister is definitely ASD and she believes it as well. As I complete reading books on ASD Asperger’s I give them to her to enjoy as well. We have identified the path of autism in our family as well. My uncle James was neurologically challenged his entire life. Many said that it was because he was “retarded”; a word that was used in those days for anyone who was slow or mentally not neurotypical. My mother knew him (I did not), and said he may have been that way after a fall from a balcony in a theatre. I spoke with his brother before his death and he adamantly told me he didn’t believe James was not retarded, and that he “just thought differently than normal people.” I did a DNA test for genealogy purposes. It’s very easy to do. Sent it in for the results and they sent back a letter stating that I needed to re-test that there seemed to be something different about my DNA. Weird huh. So I swabbed the inside of my cheek again and sent it in. They sent me another letter saying they had tested the sample three or four times and that my DNA was very unique from the general population and they had originally thought they had some corruption in the sample or the test. It turned out – I’m just different. Ha!
Chapter 5 – Page105 – “The way out [of confusion] is extensive research into ASD using reliable information sources and specialists. Be aware that misinformation can exacerbate confusion and impede recovery, so be discerning always.”
From the wonderful Philip Wylie book: “Very Late Diagnosis of Asperger Syndrome (Autism Spectrum Disorder) - How Seeking a Diagnosis in Adulthood Can Change Your Life.” It’s a nice read for any Aspie who is diagnosed later in life.
I think this is so right for me. What I’ve decided to do it to learn all I can about this condition from credible and professional sources and of course blog on Tumblr. Hopefully that will help me decide the next steps for me and perhaps I can help a few other people at the same time to understand themselves better.
Chapter 7 – Page 141 – “People with ASD are vulnerable to sensory overload, so it’s important that we live in a serene place that supports a relaxed lifestyle.”
From the wonderful Philip Wylie book: “Very Late Diagnosis of Asperger Syndrome (Autism Spectrum Disorder) - How Seeking a Diagnosis in Adulthood Can Change Your Life.” It’s a nice read for any Aspie who is diagnosed later in life.
This is the last quote I will post from this book. It helped me a lot and I am grateful to the author for taking the time out of his life to write it. All of my life, I needed a specific environment to even get close to feeling safe and relaxed. I never was able to relax completely, no matter what. Always on edge. Life has gotten much better over the years due largely to technology. Before the introduction of cell phones and applications that run on them, I used to experience a great deal of fear and anxiety every single day. I was tired and crabby and depressed due to this every single day and there was little relief. I’m now able to compensate for my lack of directional capability by using Google Maps and as a backup my directional capability in my vehicle. I’m able to have entertainment in my home to the max so that there is no need to go out for entertainment at all. For years, I have not been in a brick & mortar retail establishment because ALL of my shopping is done online. Packages are left at my door and I open it and get them on my schedule. I don’t have friends that I “do things” with. I don’t want that and feel much better without it. I compensate for all of my challenges due to my condition using compensating actions and methods. Life is getting better thanks to brilliant people who invent new technologies and applications. I don’t go to parties, or social engagements. I am now reading the Expanded Edition of “Pretending to be Normal” by Liane Holliday Willey. More posts on that as soon as I am able to digest for a bit.
Chapter 1 – Page 33 – “Naïve – Many people who have ASD are easily tricked and manipulated due to our lack of cognitive empathy (our ability to perceive other people’s thoughts and feelings)”
From the wonderful Philip Wylie book: “Very Late Diagnosis of Asperger Syndrome (Autism Spectrum Disorder) - How Seeking a Diagnosis in Adulthood Can Change Your Life.” It’s a nice read for any Aspie who is diagnosed later in life.
As a youth, I was continually tricked and misguided by others who just wanted to have fun at my expense. Even in my early work years, I was so naïve that I was easily manipulated; wanting nothing more than to please others no matter what it took. I could always be counted on to put the office first before anything else, and that suited me because it gave me the reason I needed to skip family gatherings which I dreaded. It took years to understand that I had a choice and didn’t always need to do that, but only after some personal failure and professional help. I still have an obsessive “I need to make others happy at my expense” and low self-esteem thing going on in my deepest psyche; and must continually evaluate where to draw the boundaries. I’m still very vulnerable and so I stay away from people. It’s still hard.
Chapter 2 – Page 48 – “According to the Asperger’s Association of New England (AANE), other research studies have found that 73 percent of children with ASD experience sleep problems (Goldberg and Berkman 1973), so the prevalence of insomnia may not change much with age.”
From the wonderful Philip Wylie book: “Very Late Diagnosis of Asperger Syndrome (Autism Spectrum Disorder) - How Seeking a Diagnosis in Adulthood Can Change Your Life.” It’s a nice read for any Aspie who is diagnosed later in life.
I know I always have and probably always will NOT be able to sleep at night. When I was a kid, I would be up reading while the family slept. These days, my mind is busy doing a lot of things each night. I take pills to get to sleep – or – I don’t get to sleep. Last night it was 2 am when I got to sleep. Awoke at 6:20am and worked all day until 6:30pm, then home, dinner, and then doing what I need to get done each night. Lots to do always!
Chapter 2 – Page 49 – “Unfortunately, a common issue among older autistic individuals is distrust of the medical profession, especially psychiatrists and psychiatric hospitals.”
From the wonderful Philip Wylie book: “Very Late Diagnosis of Asperger Syndrome (Autism Spectrum Disorder) - How Seeking a Diagnosis in Adulthood Can Change Your Life.” It’s a nice read for any Aspie who is diagnosed later in life.
I have very rarely had a medical doctor actually help with pertinent information. They only want to prescribe pills. Everything I learned about nutrition, depression, diabetes management, heart care, and eating properly I learned on my own!! Seriously. I don’t trust doctors. Do not, ever! I would recommend to everyone – if you want something done – DO IT YOURSELF! You can always confirm it with the doctor, but do the work yourself! Please. The doctor will not tell you what you need to know for sure and certain.
Chapter 3 – Page 65 – “Another complication for late-diagnosed adults is that we may have spent decades pretending to be normal, so observation-based diagnostic techniques may fail if we successfully managed to hide our autistic traits.”
From the wonderful Philip Wylie book: “Very Late Diagnosis of Asperger Syndrome (Autism Spectrum Disorder) - How Seeking a Diagnosis in Adulthood Can Change Your Life.” It’s a nice read for any Aspie who is diagnosed later in life.
I did literally spend decades pretending to be normal and compensating for the wiring of my brain. I have gotten so good at compensating, that many times it looks like I am neurotypical – but I am definitively not!
Chapter 1 – Page 34 – “Some of us try to hide our condition because we are scared of psychiatry, mental health treatments and psychiatric hospitals. Our survey provides evidence that many autistic adults distrust psychiatry and avoid it at all costs. (Wylie and Heath 2013).”
From the wonderful Philip Wylie book: “Very Late Diagnosis of Asperger Syndrome (Autism Spectrum Disorder) - How Seeking a Diagnosis in Adulthood Can Change Your Life.” It’s a nice read for any Aspie who is diagnosed later in life.
Growing up in the decades of 1950, 60, 70 put me right there with the idea of the “nut house”, and straight jacket for “loonies” and so on. There was never a time when I ever got feedback that perhaps the mental health profession could help someone. It was always where men put women that were crazy and could not be controlled. It was where electric shock and drug therapies occurred and it was where people in white coats forcibly took the crazies to rooms that were padded to be locked up for as long as some doctor wanted them there. The families were embarrassed, and would never tell anyone that a member of their family was in one of these places. It just was not done. So… yes, I always did have a fear of the psychiatric practice, being on anyone’s radar, getting some kind of bureaucratic record of being crazy, or socially different, and perhaps getting aligned with some institution and never getting out of the belly of the beast. I always hid from others my true self. For people of my generation this happened wayyyy too often and we all knew that it could occur, and heard stories of lives and reputations ruined. Today things are very different (thankfully).
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