I've been dealing with my son's autism since 1970, when autism was considered to be a mental illness and most people had never even heard of it.
What I have come to see more recently is that, as the definition and diagnosis of autism have broadened, there are many children being diagnosed with autism by doctors who may have little understanding of the profound challenges associated with the most severe forms of autism.
My son is considered Level 3. He lost what little speech he had at age three and has remained nonverbal. If your child has the kind of profound autism my son has experienced, it can be difficult to interact with parents whose children have a Level 1 diagnosis. Their experiences can be very different, and they may not fully understand what you are dealing with. It can be a very lonely existence.
My son was placed in a public-school program that was then designated for children considered "severely mentally retarded," a term that is no longer used. There was a parents' group that I could easily relate to because their children had significant disabilities, and those parents understood many of the struggles I was facing.
Children with the most profound disabilities associated with autism can be extremely inward-focused and difficult to reach. As I came to understand autism through my son's experience, I began to understand why the condition was given that name. The word autism comes from the Greek word autos, meaning "self," reflecting the historical idea of being turned inward or focused on oneself.
What I dealt with may not apply to your situation but if anything I've shared sounds familiar then maybe what I learned may help.

Caring for my son never ends and he is 59 years old. The school he attended in his early years gave me a break five days a week. At one point, the school actually lost him. He had a knack for knowing when no one was looking, and he would escape. This particular incident happened at the first public school he attended. The police came to my home, a helicopter was used in the search, and my son's father and uncle left work to help look for him. He was eventually found by his father and uncle in the backyard of a house across the street from the school.

I’m sharing this because I think it is important to understand that your child will need you and your family members to always be his or her advocates. My son lived at home until he was almost 21. By then, he was no longer attending school, and I was a working mother with three younger children. My son wasn't sleeping, and the situation was creating a great deal of stress and exhaustion for our family. The needs of my other children also had to be considered, so I made the difficult decision to place my son in a care facility. Even there, they managed to lose him at one point.

He has been in different care situations throughout his life, but I have always continued to watch out for him and pay attention to how he is being cared for. I mention this because it sounds like you might benefit from having the support of others if you don't already have that. You also have to take care of your own needs so you can be strong enough to care for your child's needs.

I even have a website dedicated to my son and his story.

I was going to add an answer, but I think people here are suffering more than me. My daughter is 9, and nonverbal. We worry what will become of her if anything happens to us. For now, we help her anxiety by sticking to her routines and allowing her water play, which is what she adores. I cope by flying, which is a hobby of mine. Her mother looks after her while I take a break, and I do the same for her.

@A MyAutismTeam Member please do share everything as that’s what this site for
I would like to hear what you want to say
your input just as important as anyone else

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A MyAutis...

Night-Before PrepSet out clothes: Choose soft, tagless, familiar fabrics; lay them in order of dressing.Pack gear: Load backpacks, water bottles, and lunch items.Prep food: Stock easy, safe breakfast options to bypass morning decision fatigue.

I been doing this since middle school. Prepping so I have more control of time slots

Step-by-Step Flow (Buffer & Regulate)Time / PhaseActionSensory / Calm TipWake (0–10 min)Gentle riseSkip loud alarms; use a sunrise lamp, soft back rub, or quiet stretch.Regulate (10–15 min)Nervous system activation2 minutes on a mini-trampoline, heavy-work hug, or deep breaths.Fuel (15–25 min)Predictable breakfastFamiliar foods, low-smell environment, limited visual choices (2 options max).Hygiene (25–35 min)Task analysis breakdownBreak teeth brushing into micro-steps via the Therapy Partners Guide. Use visual timers.Launch (35–45 min)Transition bufferGive 3-minute verbal/visual countdowns before door exit.Core Tools That WorkVisual schedules: Real-photo or icon boards (magnetic or laminated) so the child leads the sequence, not your voice.Transition warnings: Use visual countdown timers (like a Time Timer) or a specific transition song.Controlled autonomy: Offer binary choices ("Blue shirt or gray shirt?", "Toast or cereal?") to build agency without overwhelm.

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Aug 27, 2025 — 5 Strategies for Stress-Free Mornings · 1. Prepare the Night Before · 2. Use Visual Schedules and Checklists · 3. Allow Extra Time for Transitions

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