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This is a memorial episode, to honor the life and legacy of Mary’s 90 year old (very) late discovered autistic mum who sadly passed away in April 2023.
Mary wanted to record an episode about how the 'mystery' that was the spikeyness of her profile gave Mary the motivation to turn detective on why they were both so misunderstood and misrepresented.
Mary was eventually formally diagnosed autistic (age 51 in 2017). Already in the most humongous burnout and unable to continue working, Mary became a carer for her mum late in 2019 and she was sure that her mum had hit an autistic burnout crisis too.
In 2022 Mary did manage to get their GP to accept self identification for her mum, after a few years of banging her head against the brick wall of expecting he could understand that she was too infirm to access diagnosis (never mind that she would probably have died before getting to the top of the waiting list).
Sadly however, this did not open up any possibilities of finding autism informed elder care or autism informed support for Mary and her mum.
Struggling so badly that she couldn't keep her safe from falls and several resulting hospitalisations which were disgracefully inadequate, Mary believes that her mum might have survived if there had been some proper understanding of her needs in her final days.
Their GP de-listed both Mary and her mum just before she died because she wrote a letter asking him to do more for her mum.
Mary’s mum died without a doctor.
Mary had asked numerous times for a diagnosis of EDS/connective tissue condition because there were clear connections with both their symptoms.
Mary wanted to say this about how accommodations have enabled her to record this episode:
“Your understanding and lived experience is in itself all the accommodation I require. You have given me all the support I need to prepare in advance and your intentions are transparent. You are supporting my reality rather than challenging my motivation. Such adjustments as your support have not been there for me in other environments, especially at work which was damaging my health to the point of being unable to continue working. Thank you for accommodating me”
Email: marycam66@googlemail.com
Mastodon: @autoperipatetikos@neurodifferent.me
Twitter: @MaryStarbuck3
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