Autism Interview #98 Part 2: Old Lady With Autism on Advocacy and Autism Resources

This is the second part in a two-part interview with the blogger known as ‘Old Lady With Autism.‘ ‘Old Lady With Autism’ is on a mission to advocate for late-diagnosed individuals on the spectrum as well as autistic elderly who may not have received a diagnosis. Last week she offered insight into her difficulties growing up undiagnosed as well as why it was so important for her to receive a formal diagnosis into her sixties. This week she detailed her mission to use her blog to improve understanding of and support older autistic individuals (with or without a diagnosis).

What inspired you to start a blog? What do you wish for your audience?

I was the caretaker for my autistic mother for the last years of her life. She also suffered the ravages of dementia and Parkinson’s disease. She lived the last years of her life in a nursing home, in the dementia ward. We did not know or understand either her autism or mine at the time she passed away. My self diagnosis and concurrent understanding of my mother’s autism came well after her death. 

 When I was searching for how autism expressed itself in older people, and particularly in elderly women, there was very little information available. I would eagerly turn to articles online titled ” Late diagnosis in Autism” or  “What it feels like to have a late diagnosis of autism,” and these were articles written by people in their late 20’s or early 30’s. I could find only one blog written by a man who was diagnosed at age 54, who came even close! 

I spent hours online reading blogs, having discussions in forums (one for older autistic people with recent diagnoses was particularly insightful), ordering books from the library and online, reading voraciously, and taking copious notes. I was able to glean a little information from many places and began to put together an understanding of autism as it applied in particular to me and my mother. 

I wished sorely that we had known about and understood her autism at the time we placed her in the nursing home. So many of her behaviors, which we just thought of as “mom” irritated the staff. They thought her echolalia was a form of mockery. Her insistence and persistence of preferences, throwing herself out of her wheelchair, and other behaviors were partially her dementia, but it was also, as I see it in retrospect, part of her autism.  Things most people interacting with her thought were her dementia, were actually her autism and traits she had always had, not something that had recently occurred. She fought sudden touch like a tiger… staff would simply approach her and move her toward the dining area or take her to the toilet without any warning or preparation. Same for bathing and other care. If they could have prepared her by telling her what they were going to do and allowing her to adjust before proceeding, they would have caused far less distress, and mom would have given far less trouble. 

I wrote a blog to show the compiled information I gathered about autism, especially autism as it is experienced by older (age 60 and above) people. I hoped to provide a sort of collection of autism-related facts and concerns and address them for older people in a way that might be useful for self diagnosis and a stimulus for further growth and development. I also hope this blog is the first step in advocating for older autistic people who may not have been diagnosed, but are in situations like my mother was, where knowledge of autism could lead to reasonable measures being taken that might help both residents and staff so there are fewer struggles, less anger, and safer situations for all involved. 

I hope to speak to nursing homes, senior centers, police and fire departments, caretakers, professional staff in home and residential care, etc. to raise the awareness of the part autism can play in difficult behavior patterns and social struggles in elderly individuals who have not been diagnosed, but may be autistic. I know what a difference knowing about my own autism and understanding has made in my life. 

Regarding my audience, I wish for other undiagnosed seniors to find insight and understanding to the long standing questions and struggles of their early years. Knowing autism as the answer has given me the ability to forgive myself and stop the cycle of self hate and anger at others over so many incidents long ago. It was nobody’s fault; we are not failures, wrong, bad, cruel, cold, lacking character or morality. (These are labels many of us have been saddled with and live with as self images due to so many negative experiences in earlier life). Now we know it was autism! Autism was in play and not one of us knew it! 

I hope to help older adults, diagnosed, or not, and those who love them or work with them, live with them or care for them, to understand autism and how it affects those of us who are autistic.   

Have your self advocacy skills changed since you realized you were autistic? In what ways do you self advocate today? 

I openly represent myself as being autistic since I “self diagnosed.”  This being only a year ago, I have not had very much experience as an “official” autistic person. I found very little about older adults and autism available to me on the internet and in print, so I started the blog to share information about autism as I experience/experienced it, and as I learned useful and interesting facts about elderly experience of autism.

I  hope to be able to generate a printed sheet or booklet explaining common autistic behaviors in elderly adults, and to encourage people working with elderly populations to think about autism when they encounter certain behaviors and traits in clients, neighbors, co workers, or family members. I hope to show how knowing that one is autistic can help understanding and self care as well as improve living situations and make things easier for both the autistic and the other persona involved. I have been openly discussing and advocating for depression and mental illness (we have a handicapped daughter) for many years now. I guess my skills perhaps have not changed much, but my plans have! 

What mistakes do you see made in the advocacy of some NT autism advocates?   

I do not feel qualified to answer this.  If anybody is reaching out and trying to promote better understanding of autism, draw awareness to the needs of autistic people, or attempting to help, I can only see that as good.

I have learned that certain people seem to think there is only one way problem solving should be approached, and that some people get very offended by things others say or do. 

Politics is in autism, as it is in any group of two or more people gathered anywhere. We all have opinions and many struggle with issues of power, control,  or perception. 

If I am not “doing” autism right, well, it is a wide world and something is probably out there for everybody.

I have taken information and insight from many groups representing many sides of ongoing arguments surrounding autism and its issues. I am glad people are approaching all sides of it. It adds perspective. I decided some of the ideas presented did not seem viable to me, others I embraced wholeheartedly. I think it is up to the individual to decide for themselves.

I guess I don’t worry about if somebody else is making mistakes or “doing autism” wrong. Take what is useful to you, and apply it, discard the rest.   

What are the best resources you have discovered to help others understand autism?

I find most of my information through scientific papers posted about ongoing autism research, through reading posted articles (and following up on documentation) on the internet, and by reading books. Print media of any sort is the way I process information the best.

Theresa Regan describes autism and how it works in her two books. “Understanding Autism in Adults and Aging Adults” and “Understanding Autistic Behavior.” 

I also appreciate Tony Attwood’s book ” The Complete Guide to Asperger’s Syndrome.” I read this several times before I realized I could apply much of the discussion about young children to myself as a child. After reading it the first time through, I thought of it as another manual for diagnosing children of elementary school age or younger. But after about 3 read-throughs and copious notes, I thought I had a much clearer understanding. I could see how so much of the descriptions applied to me growing up, how much of this has changed for me, but also how I am still deeply affected by autism.  

Reading for older autistic people is difficult to come by. Most works are aimed at parents and teachers of children, but this is rapidly changing, and autism awareness for all ages and for all genders is manifesting itself in printed media. Witness the proliferation of so many new books released this past year alone, regarding all aspects of autism.

However, I would warn here on the dangers of pseudo science, books making claims for cures through special behavior techniques, diets, sound, light, massage, electric or magnetic means, minerals and supplements, and a myriad of other claims that have not been substantiated through true scientific method. There is a great difference between single clinical trials which propose a theory and which seem to point to certain issues, and a series of controlled studies which will prove or disprove the initial theory.    Until those test results are proven through a series of studies in which the results of that initial trial is replicated, it is only a theory, and not proven (Note the problems such ideas caused regarding the vaccination fiasco of a few years ago. Thorough testing and studies showed the initial trial was incorrect, but not before much damage had been done, and is still ongoing.)

Others have access to streaming broadcasts, video presentations, and live lectures or seminars, etc. There is a mountain of information to be sifted and more becoming available every day. Even information regarding autism in the elderly. I think all the work so many people are doing to raise awareness of the issues surrounding autism are beginning to bear fruit. 

Coming from where things stood in my mother’s or my own childhood, we have made tremendous progress, especially in the last 10 years or so. We still have a long way to go to train good medical doctors, therapists, psychologists, psychiatrists, and others in the medical professions regarding autism, but even there, in some countries, awareness and education of diagnosis of autism is becoming slowly better. Not a minute too soon! 

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1 Comments

  1. Kmarie

    Reply

    This is needed. This is the reason I’m terrified of aging and I never ever ever want to be in a nursing home – hell on earth defined besides hospitals .

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