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Autism

Before you read: Please know that I am not an expert. I’m simply sharing our journey and the resources we’ve found helpful along the way.

Well, we were recently diagnosed with autism. It’s been an interesting ride. It started with mental illness and hallucinations a year ago, and this year, we received an autism diagnosis. I’m not even sure where to start with all of this.

NOTE: Before anyone crucifies me for my lack of sensitivity, let me say this: right now, I’m just trying to survive day to day. I realize there needs to be a lot of positivity and the whole “Autism is a superpower” narrative. But here’s the truth—I’ve spent the last year just trying to keep my kid safe and alive. I haven’t had the chance to experience the “superpower” yet.

My son has had ADHD and anxiety since he was very young. When everything began last year, we made multiple calls to law enforcement, took numerous trips to the ER, and spent a few weeks in inpatient treatment. It took six months for him to mostly recover from the inpatient stay due to the antipsychotic medications he was prescribed.

Our big questions were:

  • What do we do?
  • Who do we call for help?
  • What steps should we take as a situation escalates?
  • How far should we let things escalate?
  • What is considered dangerous?
  • What responses match which situations?

We started by asking friends and neighbors. Our son was adopted, so we contacted our post-adoption caseworker. We also spoke with his doctor, therapist, and psychologist. Many resources and strategies were recommended to us, but they didn’t seem to fall into place effectively.

Even now, after a year of this, I can’t say I’m 100% comfortable or fully knowledgeable. But there are some steps that seem to work over time. They are:

  1. Low-Level
    • Find something that de-escalates the situation
    • Have a “Safety Plan,” which is a set of steps they will take to self-regulate.
    • Get the help of a trusted neighbor or friend
  2. Mid-Level –
  3. High-Level
    • Police (Last Resort)
    • ER
    • Inpatient Admission

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I realized after writing this list, is that some people might ask what these different escalation levels actually look like. Here’s how I would describe them:

  • Low-Level: This includes behaviors like excessive anger, agitation, frustration, or fighting.
  • Mid-Level: These are the same behaviors, but more intense—so much anger and fighting that it disrupts home life. This might also include running away or expressing thoughts of self-harm.
  • High-Level: This is when things become truly dangerous—acts of violence, serious expressions of self-harm, threats to others, or behaviors that cause you to genuinely fear for the safety of the individual or those around them.

The first time things escalated, it felt like everything was moving at 100 mph. We had no idea what to do. Calling neighbors and friends didn’t help. Reaching out to SMR (Suicide and Mental Health Response) or MCOT (Mobile Crisis Outreach Team) didn’t seem to help either. It felt like we were running into brick walls.

Eventually, we called the police.

At first, the officers were kind and compassionate. Each time, though, they wanted to issue a citation or something called a “Pink Slip” (they never explained it well enough that I understood what it was) so our son could access additional services.

We resisted the Pink Slip for as long as we could—until one incident changed everything. The police came to help as our son was running away. They called out to our son, and he ran. They chased him down, tackled him, and cited him for resisting arrest. Oh brother. We were not pleased.

His probation officer told us it wouldn’t be a big deal as a first offense, especially since he was a juvenile. But then we found out our state uses a point system—and our son had everything stacked against him. He was just one point away from having the full weight of the law come down on him, all because of a citation that should never have happened. Since then, we’ve made every effort to avoid involving the police.

We visited the ER three times. Initially, they wouldn’t admit him because he wasn’t actively trying to kill himself or anyone else. But once they determined he was hallucinating, they kept him. It became a cycle— in and out, in and out—until he was finally admitted, transferred to an inpatient facility, and started on antipsychotic medications.

To this day, we still don’t know exactly what caused the mental health crisis and hallucinations. We suspect it may have been a mix of factors, including his existing ADHD medication and changes in his body due to puberty.

Over the next six months, we went through two in-home programs:

  • SMR: They offer a program where a therapist visits your home 2–3 times a week for 6–8 weeks.
  • Families First: They provide in-home family services for about 8 hours a week over 10–12 weeks.

If you’re facing similar challenges and have the opportunity to enroll in the SMR program, I highly recommend it. It’s been excellent for us. Families First was also helpful, but we’ve come to rely on SMR more because of their continued availability and support. They’ve truly been wonderful. They’re not perfect—but the good they do far outweighs any negative or frustrating moments we’ve experienced. And to be fair, we are not perfect either.

There were many times our child would start to escalate or refuse to go into school. We’d drive there, and he’d sit in the car refusing to get out until he had spoken to someone from SMR. They’ve been a tremendous resource—full of compassion, steady voices willing to hop on the phone and help talk him down. Over the last year, we must have called them a hundred times or more.

Amazon: Autism

About nine months after the original episode, things started to escalate again. This time, the situation took a different path. The last time, it was hallucinations. This time, it was suicide. And why wouldn’t it be? Once you enter these programs, you’re constantly asked if you want to take your own life. Self-harm or suicide is a constant theme.

After multiple cycles of ER visits, inpatient stays, and PHP, we finally got him into a day treatment program where they could spend more time with him and conduct the psychological testing he needed.

Along the way, multiple people mentioned Autism. So, in some sense, we were prepared for it. I guess we just weren’t prepared for his response to it.

  • Aspen Grove – Inpatient – We did not like.
  • Wasatch Canyons – Inpatient – PHP – Day Treatment – Was better
  • Utah State Hospital – This has been on the list as a last resort option
  • PHP [Post Hospitalization Program] – We did this at Wasatch Canyons
  • Day Treatment – We did this at Wasatch Canyons
  • Residential Treatment – This has been on the list as a last resort option

The therapist at Wasatch Canyons (IHC / Primary Children’s) shared the Autism diagnosis with us during a family therapy session. At the same time, it was disclosed that Wasatch Canyons felt their Day Treatment program was no longer a good fit for him. So, they released him from the program a month early.

It was like dropping a bomb on our kid—pulling the rug out from under him—and then patting us on the back and telling us, “Good luck.” It left our son feeling broken and retarded (his words, not mine). There was nothing we could do; he heard the diagnosis directly from the therapist and saw them drop him from the program he was in. He took it as confirmation that something was massively wrong with him. He felt worthless. We have listened to him express his worthlessness for the last two weeks in just about every way imaginable.

We were not at all pleased with how this went down, or with the situation it left us in.

We were out of options. Returning to his old school was not a viable option. He had been accepted into Spectrum Academy, but not for another five months, not until the fall. And now he had a diagnosis for a disorder we knew nothing about and had no idea how to support him. His escalations have increased.

A week or so later, we were able to get him into Crimson Heights. I don’t really know how to explain it—other than it being like a Big Brother Big Sister program for kids with Autism. So far, it has been positive. Tonight was our first night in weeks without threats of running away, violence, or suicide.

AUTISM SERVICES

A Final Note: I know this is a tough and deeply personal subject. Please don’t judge me for not having all the answers, or for struggling to explain these circumstances. There are many days I wish I were a better father than I am. I hope—and pray—that the day will come when our son learns to master himself as best he can, and that it leads him to a long, rich, and deeply fulfilling life.

The journey begins.

Amazon: Autism

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