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How You Experience Autism

Autism (ASD) | Last Active: Aug 22, 2020 | Replies (171)

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@dowagerginger

Though certain phrases connected, the article in whole did not resonant with me. I am currently accepting the DX of autism. I was diagnosed with Asperger's in the late 60s, and learned to emulate the perfect little girl after 3 years of intense therapy (more like dog training). In the irony of the universe, both the men I had children with ended up being on the spectrum so all three of my living children have some effect, especially the boys.
My assimilation was successful for many years until I was rehabilitated from a head injury car accident in mid 90s. Since then it has been a struggle to pretend to be the same person everyone was familiar with. Though from childhood I have never been able to tie laced shoes correctly, tell time (the accompanying dyslexia affected numbers greater) on standard clock, say certain words. I enjoy gentle fabrics but had learned to tolerate most tactile sensations (my therapist was like an episode in the rainmaker with more hostility towards me...~sigh. But it did work in my case). Currently my quirks that disable is phobia anxieties (mail box, driving, opening envelopes) and my inability to keep proper expressions and eye contact during conversations and interviews. As child and teen I was precocious, friendly, irreverent, athletic(but not into team sports). Yet I accepted very few close friends, trusted fewer and despised my generation peers. I liked adults or very young children. I didn't want to be "lonely" but preferred to be "left alone'. I liked socializing in 'settings' like holidays or event functions (weddings, charity events, banquets, select dances)...otherwise if there was more than 4 people I would bail.
My youngest with DX of Autism at age 3 after a sudden onset following illness became non responsive and non verbal. 2 years later he became more responsive but verbal ability and static communication ability have yet to reach a standard of safe independent function. If the spectrum is truly caused by same thing I'd be surprised since his expression and mine are a universe apart though sharing certain aspects of galaxies,
In her article the one thing similar is SOUND. Suppressing irritability, because I can hear the tags of my neighbors dog jingling while it scratches or hear people chattering and scuffing feet two houses down at midnight before they finally pass, is quite challenging. My type migraines also are problematic (Vestibular and Aural).
Dealing with my son's autism is another life challenge. for the most part we live amiably but I worry about his future since I am considerably older and his father is untrustworthy to be a caretaker as our his siblings who are not close. He doesn't accept a lot of people in his inner world (at home persona) though he is pretty friendly and has few 'space' /'touch' issues; his public self and home self have different criteria of tolerances. I want him to continue to expresses what he wants and do what he wants in his own time, which most group homes do not really accommodate. He has weird sleep hours that are not going to be coaxed (he is now 14... how many more years would it take). He likes to create works of art or just doodle, He plays a modest amount of games online and off (far less than I do..lol). He sings lovely despite rarely speaking, and plays guitar and harmonica so far. He is really proficient in math. He can cook modest dishes on cook top(like omlette, sausage, hot dog ramen, grill cheese) in reliable way (proper use like temp and on/off procedures) and make sandwiches, he does typical housework without prompting. Our chores have no schedule except Thurs. Just who sees it, does it on the spot. But his current ability would unlikely be able to watch paying bills for overhead or notice embezzlement from a dishonest caretaker nor do I think he would learn to drive. His ability to take typical instructions for complicated tasks is greatly retarded though once he learns it is engraved in steel. So driving, cashiering/counter service even data entry...nixed.

My "experience" is that of a camouflaged alien. Though I was good at pretending to be human and assimilated well, there was always some uncanny valley that would make humans mark me as "different". It was hard stressful work every day from the moment I wake to bedtime until it became automatic. But when getting praised for ability, I would also appear insincere, uncaring if I used autopilot too much. If in new situation and anxious I'd be assumed scatterbrained. Just no winning for being born on the wrong planet. ~sigh

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Replies to "Though certain phrases connected, the article in whole did not resonant with me. I am currently..."

Hello @dowagerginger and welcome to Mayo Connect! I'm glad that you found Connect and posting in various discussions. From what you say in this post, it appears that you have a lot of personal insight into your own autism and that of your children.

If you care to share more, what has been the most difficult adjustment for you and others who are on the spectrum? Is it the acceptance of yourself or acceptance by others?

@dowagerginger Let me add my welcome to Mayo Connect, where we have the opportunity to share experiences and relay what has worked [or not worked!] for us on our journeys. May I ask how you heard about Mayo Connect?

Just like so many health issues, be they mental or physical, it seems each person has their own take on the situation. It's always important for me to remember that, as it helps me understand myself more. As far as being on the autism spectrum, I was formally diagnosed in 2013 or so, and it really assisted in letting me see how my life as progressed, and the issues that made me uncomfortable were not always my doing, or of those around me. Acceptance of such a diagnosis is important.

There are many of us "auties" here on Mayo Connect. I invite you to look at this group https://connect.mayoclinic.org/group/autism/
You will see there are several different discussions in process, some of which may be of interest to you. @mamacita is a person who eloquently describes her life as a person on the spectrum.
Ginger