Meet others living with autism: Come say hi

I am sorry you are hurting. I know there is no consolation in others getting hurt, but if you can visualize and get a chuckle. I am so clumsy or uncoordinated they could make a chaplain movie. So I can definitely relate to falling, I am thinking of you.

Wow!

Just wanted to make sure you all know that Connect just opened up a brand new group dedicated to COVID-19 https://connect.mayoclinic.org/group/covid-19/. If you're interested in following it, click the +Follow in the upper right hand of the page. Please feel free to look through the discussions, participate where you'd like and start new discussions about topics relevant to any aspect of coronavirus, COVID-19.

I found this article to be very helpful in understanding autism. I'm wondering what you would do to make your world safer when there is a sensory overload. Would you comment on your experiences?

Autism Discussion Page
May 18 at 10:11 AM · Public
Emotional Response to Sensory Overload
If the brain is too overwhelmed with sensory overload to shut down, then the result is often a meltdown. Figure 13.2 displays how poorly filtered sensory stimulation overwhelms the Limbic System (emotional centers). Also, the weak neuro-connections between the Frontal Cortex (thinking centers) and Limbic System makes it hard to inhibit emotional impulses. Consequently, strong, impulsive, emotional reactions occur.
Figure 13.2 Sensory stimulation overwhelms the Limbic System resulting in meltdowns
When the brain cannot adequately filter out stimulation, there are massive amounts of stimulation flooding the limbic system, where our raw emotions develop. This is a very primitive part of the brain, which generates our raw emotions. For most of us, our raw emotions are held in check, tapered down, and modulated by the thinking part of the brain in the frontal cortex. We might get an immediate impulse but check it long enough for our thinking part of the brain to appraise the situation and tell us how much threat the stimulation is.
For those on the spectrum, especially the children, the neurological pathways connecting the Frontal Cortex to the Limbic system are not well developed, rendering the thinking part of the brain weak in controlling the emotional centers. Consequently, the flood of emotion overwhelms the cortex before it has a chance to inhibit the reaction to the emotion. Hence you experience poor frustration tolerance, weak impulse control, and limited ability to control one’s emotional reactions. The tidal wave of emotions simply floods over the cortical control. To these individuals, their emotions can be very unpredictable and scary, which leaves them feeling insecure and vulnerable.
Figure 13.3 Behaviors associated with sensory overload
The negative effects of sensory overload can help explain many of the behavior challenges that we experience with autism. The constant anxiety and irritability can leave the nervous system defensive and on high alert. So, to summarize, sensory overload can result in meltdowns, shutdown where the child is withdrawn and unresponsive, self-stimulation to block out stimulation and calm the nervous system, ritualistic and compulsive behaviors to control the stimulation around them, oppositional and defiant behavior to minimize uncertainty and a host of disorganized, hyperactive behaviors.
The children often need to control everything around them to reduce uncertainty and obtain predictability. They can be highly resistant to follow the lead of others, very apprehensive in situations that they are not controlling and act out to avoid or escape any of these situations. Unfortunately, adults often read these children as oppositional, defiant, noncompliant, and manipulators, without understanding why they are driven to such resistance. We tend to command and demand respect and compliance, which only overwhelms the child even more. The adults often take it personally and try to use techniques (command and demand, pressure, scolding, punishment, etc.), which may work with typical children, but for those on the spectrum it only increases the fear and overload, sending the brain into further panic.
This article will be published in the upcoming book, “The Autism Discussion Page on stress, anxiety, shutdowns and meltdowns”

HI! Original DX of Asperger's was in 1967, . Therapies until I was "cured" in 1970 (aka Passed for "normal"). Re-evaluated 2019 with DX of "Autism".
Since unlike males effected I was quite chatty and precocious, my "cure" was faster . Meh.

My two older children are likely on spectrum but their father refused testing to show any "taint" since he was embarrassed already by 2 severely effected cousins and was 'impaired child' until he was 7 (even now won't give DXs. or admit. His mom told me). My daughter has a ton of sensory issues. Her super precocious brother had weird habits like spinning , head banging, eating non food and didn't speak til he was 3.5. Both didn't potty train 100% until nearly 8 yrs.
My youngest son is in my control. He has been a DX Migraine sufferer since age 1; so as soon as he became odd at age 3 after being ill, I started to advocate that he needed testing (though I thought he had a stroke). He had seen neurologist for migraines. autism was brought up. After a move to AZ, I was lucky that an old friend's mother was a nurse and she coaxed her boss and our FHP into kicking us up to an expert. And quite an expert we gained. Dr Kessler of SAARC. After onset I really had a problem because unlike if he had been effected all long like my two older kids, his behavior , personality and ability to speak were whisked away within 3 weeks, I even kept calling him a "changeling" for first year since it seemed my absolutely brilliant toddler (he could already read 1st grade level books and had rudimentary math skill as well as his ideas and conversations and behaviors. I rarely watch videos from before the onset since they upset me even to this day) had been stolen and replaced. His high fever for 2 days that required ER I wont say much about.. maybe he was susceptible and maybe was on Asperger/hi function end of scale is why he fell so fast or so an unofficial theory from doctors. a therapist said maybe some signs were present and my own condition led me to miss the subtle signs before the onset.
After he was around 7 his previously buried personality emerged and was very much as before. He still liked to draw. He became very picky eater... a diet so bland they serve better in prison. In recent years he is becoming flexible to introduce former favorites. He has always liked chinese food, most potato dishes and chicken nuggets but his once varied diet narrowed to that.
He has many eccentric quirks that he can suppress for periods of time but not completely. Most are harmless but could be annoying in certain settings. He prefers to wear soft or silky fabrics which are harder to obtain for a male. He occasionally give a verbal opinion but it is random. His lack of being able to communicate reliably or make a correct 911 call is a reason for my highest concern, plus if a untrustworthy 'babysitter' did anything. So I have been stuck in the job free zone since my mother died. She is was a major support person and caregiver. Other than my present day fiance whom he likes very much and will voip call with, the people he trusts are a small number that amounts to a good friend, a guy I used to babysit in my teens (but he is no where near presently). He has NOT liked people I had dated before the current relation. He was ambivalent on his father's family (fun for visits with food, presents and playfulness..heck a regular kid will tolerate people they don;t like in that event..lel), but resistant to go out of sight with any of them incl his father (they abducted him once saying he was not sick, it was my bad mothering ...sigh.. and he has never trusted them since. He still wont go in bathtub type enclosure after slipping ONCE in 2009..it is now 2020) At this point it would be impossible for him to live with any of them peacefully though they are a large extended family that could have been good support. He is highly resistant to getting along with men (teachers, therapists, friends, etc). he likes smaller children and generally women. At 14 he is VERY aware of women. He has been flirty since he as around 10. I can't see a group home style treatment being positive result for him. I never really thought hard about aging until my worry for him came up. I have to maximize my fresh date!
My day to day anxieties are those typical to unemployed status and addition to crazy X that harasses me every 3-4 years. And the added anxiety that the world has moved faster than my coping skills. My autism quirks are reaching debilitating levels last couple years (at least they will stabilize unlike my poor neighbor/friend next door who is deteriorating like a earth dam under her flood of Alzheimer dementia) as far as suppressing phobia anxiety,and a critical inability to comprehend certain paperwork which leads to late turn in once I decide the "right" answer. But maybe that's everyone? How the heck I know what the name of a doctor was when i was 4 years old?! or if they are alive? How the heck can I remember who a manager was at meh job 30 years ago? and of course personal questions that are vague.. so what do they want? Proof of something.. I don't even have a copy of my divorce decree nor know how to get it! But it won't be free.. i know that much. Ugh I miss the Army. Fancy no, stable , yes. Might die? heck i can get killed in a riot or drown or be hit by drunk driver. Less likely to die at war, I liked being deployed. an enemy will only shot me, unlike at home at that era when i might wake up to having my head shoved towards a wood chipper again.

So that is the past and recent me.
Current me is trying to maintain a stable environment , move forward in all life points, and start planning for a safe and independent future for my lovely youngest son while getting enough social stimulation to not become a complete recluse.

My entire day is controlled via smart phone ever since phones could have near limitless alerts. Not sure what colorcode would do in my case. Alerts? they keep my day smooth. It is not like I can't be flexible and do different but during unfocused days caused by overstimulation, anxiety, stress etc. They remind me if I have time to stand round stunned or stimming, I can be *doing dishes, * pre-planning meal, *check the mail (that I fear), *check son's homework, * should I go to bed? (vs messing on computer ).... etc etc

@dowagerginger I welcomed you on another post you made, but wanted to acknowledge you here. You certainly have had an interesting time of things. Do you have any type of support, that is, a place to turn to for advice and ideas, in your area? I imagine it is frustrating at times, and having a source locally to reach out to might be of help to you.
Ginger

Are you aware if being diagnosed after your child is diagnosed is a somewhat common occurrence?
I am just wondering if I could get a diagnosis if my daughter does.

Hello @sqrlygirldad,

Undoubtedly @gingerw could best answer this question. However, since you are inquiring about being tested yourself, can I assume that you have some similar behaviors and ways of reacting as does your daughter?

@sqrlygirldad Formally diagnosed as an adult, I spent a lot of time and energy learning to mask and "fit in" with neurotypical people, in both personal and professional relationships, all my life. It is what I had to do to survive. It took a professional to diagnose me, when some very crucial events happened in my workplace. I voluntarily sought out and paid for testing/counseling. It made things clearer to me, and understanding the way my mind works [and it is not a bad thing], helped me immensely.

How would your life change if you received such a diagnosis at this time? That seriously is a question to ask before proceeding.
Ginger