Have you ever been in a maze of mirrors, turning and weaving through a path that has no clear demarcation? Thinking you’ve found the end, and then BUMP, you run into another mirror and find that you’re still in the maze? Eventually, you find your way to the finish and, while it may have momentarily been frustrating, it was all in good fun. Right?

Our 23 y/o ward came to visit us for her birthday at the beginning of September, 2025. She has come home for visits previously, usually lasting 3-4 days and then returning to her group home. This time, we had requested an RFP for a group home closer to us. We were given a line of bunk that she had been given a 30-day notice due to her behaviours — in reality, the group home was closing due to allegations of abuse and neglect. A different group home had expressed interest, we had done an in-person visit and things were aligning and then suddenly; “We can’t meet her needs.” What needs? The previous group home administrator had told them she had a plethora of medical ailments: hypertension (not), Hypothyroidism (not), Seizures (not), and RAD or Reactive Attachment Disorder (which has to be diagnosed before the age of 5 – she wasn’t even diagnosed with Autism until she was 12). It didn’t matter that there was no documentation of these ailments – the decision was made.

And so it began.

Due to her diagnosis of ASD and IDD (intellectual disability disorder) – she is on a few medications, most of them benign. Stool softeners, a sleep aid, and something for GERD. There were some behavioral medicines: Depakote, which is an anti-seizure medication commonly used for mood disorder. Guanfacine, a anti-hypertensive used, in this case, for self-injurious behavior. Naltrexone, an opioid antagonist, used for behavior challenges. Knowing why a client’s medicines are prescribed is something that should not be discussed by an administrator who also states, “I’m not a nurse.” I only wish then I had said, “Then shut up!” Considering this group home was responsible for her medical care, the fact that she had stopped having a menstrual cycle should have been relayed to me, it wasn’t until after she came to stay with us.

On one hand, I’m thankful for the time that she’s been with us as I’ve been able to see patterns and drawbacks of care that is ineffective for her. On the other hand, I am exhausted.

Having worked in Emergency Medicine for 32 years as a RN, I am aware of the attitude of staff when an autistic patient comes in with dysregulation. They want to control the behavior, rather than attempt to bring the patient’s nervous system back into regulation. To gain control, ER providers advocate for such things as anti-psychotics: Geodon, Thorazine, or Abilify given with Ativan or Valium and sometimes Benadryl. The reasoning behind this combination is that these drugs wear off after 1-2 days. Best case scenario, sure! I’ve yet to meet an individual with ASD that presents as a “best case scenario.”

In A’s case, she was having extra pyramidal symptoms: muscle jerking, lip smacking, repetitive speech, akathisia (extreme restlessness) within 24 hours and yet the ER nurses (who are required to do annual education on EPS) did not recognize it when it was right in front of them. On taking her home, A would seem to start to come out of and then 3 days in, like clockwork, you could see her behavior spiral down until she was non-verbal, incontinent, unable to feed herself, unable to bathe or dress herself. This catatonic behavior would last for 3 weeks and then it was if a switch would flip and she would start to come out of it.

This occurred three times in as many months. The most difficult part of this was that she attached to me, not reactive attachment, but regulatory attachment. I would have to care for her and meet her physical needs while she was in these catatonic states, and as she came out of these episodes, she would identify me as the “safe” person. Initially, she would be very child-like, needing direction and then gradually able to do more on her own. Unfortunately, she also did not remember these weeks nor the events that took place, and would be mad at me because she couldn’t remember.

On one occasion, she went to the hospital because she had gotten upset and was banging her head forcefully on the window of the truck and then the asphalt after she got out of the truck. She had calmed by the time EMS arrived, but I wanted her to go the ER for an evaluation and a head CT. We headed back to our house to get my guardianship papers and her insurance information. It was a fiasco!

• Despite the paramedic telling three different staff members she was allergic to anti-psychotics . . .
• Despite having an AAC device that she was actively using to communicate . . .
• Despite being given a list of medications with allergies in LARGE RED LETTERS ACROSS THE TOP

Staff heard that she had been banging her head, decided she was combative and “out of control,” decided she needed to be “controlled” (even though she was calm and using her AAC device to communicate), and they put her into a “psych safe room.

• Per hospital protocol, security took her AAC device stating she couldn’t have electronics in a psych safe room (this is actually a Federal offense under the ADA act)
• The physician gave the nurse a verbal order for “Geodon”
• A knows she cannot have Geodon but was unable to communicate with the staff as security had taken her AAC device and being a “combative’ patient with ASD, they wouldn’t have listened to her anyway.
• She was given 20 mg of Geodon and so we started our third cycle of catatonia.

This last episode of cataonia was so bad — we had to go back to the ER for an Ativan challenge. There was no improvement, and we went back. She was no longer eating or drinking and had not urinated for 24+ hours. The ER physician ordered labs and when they came back normal, she was discharged, and we were told “She’s fine.” She wasn’t fine, and thank God her labs were normal or we would have been behind the 8-ball. They wouldn’t even consider consulting neurology. I even asked her nurse, “Does this look normal to you?” to which he replied, “I don’t know her baseline.” I can show you her baseline, I have photos, videos but you don’t really want to KNOW her baseline or you would have to DO something like speak up to the provider, and as a brand new nurse, you don’t have the balls to do so

We have to do better in acknowledging the needs of autistic patients. Autism is not mental retardation. It is not psychosis. Dysregulation is a neural processing disorder stemming from overwhelm, often resulting in self-injuring behaviors that are not meant to injure but apply pressure. Punching, head banging against walls or floors, scraping, biting — all apply deep pressure to relieve anxiety.

As her legal guardian, and an RN with 32 years of experience, I am not being overdramatic when I advocate for my ward.

She had her first appointment with her new primary care physician, a week after she had been given Geodon. She was total care at that point, very child-like, unable to speak, and when I said this was not her baseline, he looked at me as if I was some poor parent who just couldn’t accept the reality of my child’s diagnosis. It’s at these points, I want to look at the provider and say, “Yes, I’m actually a pathological liar who cannot deal with reality. C’mon!!! You KNOW me, we’ve worked together. I know what I’m talking about.”

I had to argue to get him to order hormone levels. It’s not normal for a young woman to go without periods for a length of time whether she’s autistic or not. Surprise! Surprise! Her testosterone was through the roof – not that a high testosterone level would make anyone a little angry. Suddenly, it was imperative for her to make an appointment with an endocrinologist. Really?!?!? And you didn’t want to order the hormone panel, remember? When he told me this at her next appointment, I have to admit, I cheekily asked him, “Does it hurt?” He looked mystified, “Does what hurt?” I smiled, “Telling me I was right?”

This fight is far from over.

Maybe, these providers should ask me how I know. How do I know so much about autism?

Because I’ve lived it myself for 58 years.