First Steps After Your Autism Diagnosis

After I received Cooper’s diagnosis of Autism I expected things to change overnight. I thought for sure we’d immediately start treatment or medicine or something and we’d begin to fix him.

My child was sick. Let’s fix it now. We had an answer. We knew the source.

Now we fix it.

But that’s not how autism works. It’s not a disease. There is no curing it. There is no solution.

There is managing it. There is navigating it. And it is straight up trial and error. If you’ve met one autistic person then you’ve met one autistic person.

Think of autism as hundreds of different disorders rolled into one. I guess I think about it like cancer in a way. Some people have lung. Some people have liver. There are many varieties. No two are the same. Treatment can vary.

Cooper is nonverbal. He has severe sensory issues. He has Apraxia. He is his own version of autism.

So what do you do next.Where do you start?

I was so lost.

Imagine this. You are a normal person. You are not a teacher. You are not a therapist. You are not a doctor. You are not a nurse. You know nothing about speech. Your extent of autism knowledge is a sisters friends daughter who doesn’t like tags on her clothes and refuses to make eye contact. You are not trained in any special way.

And then you have a baby. You find out that he or she is autistic. You get the diagnosis. They send you home. You grieve and start the acceptance process.

What now?

Who is supposed to help you? You know you need medical help. You know the school district should be involved. There has to be some sort of financial help right?

Where is the professional that looks at the holistic picture. The financial impact as well as the medical, the behavioral, the social.

I’m going to tell you something. There isn’t a person that does that. Not yet anyways.

I literally turned to the damn internet. I didn’t know any other people with autistic children. 1 in 47 maybe. But where the hell are they? I lived in rural Minnesota at the time. And by rural I mean 80,000 people. So. Cooper’s dad and I still say we had the first autistic child in the city of Duluth. And I stand by that.

First step. Learn more about autism. Computer on.

I keyed in Autism into google. 88,400,000 results.

Well no shit. I had searched autism a million times before. But with a different lens. I was looking for all the reasons why my child was NOT autistic.

Now I was searching for all the ways I could help my autistic child.

Different.

I started weeding through websites. Autism Speaks. Autism Society of America. It felt weird. These are huge players in the autism world. They weren’t helpful to me. They were cold. Too large.

I quickly learned that services differ by state, by county and by school district. So even if you find a kind soul on a Facebook group most likely they live in a different state.

I searched  Autism and Minnesota.

Still too vast. Ugh. Nothing in my area.

Then Autism and Duluth. I got nothing.

I turned to people I knew.

Someone told me to tell the county. Get a social worker. That felt so gross. Get Medical Assistance. That felt even worse. We didn’t need financial help. We weren’t poor. We paid our bills.

All of these services felt super invasive. I remember saying I would never do any of them. I would never allow someone in our home. I didn’t need any help from anyone.

In the weeks after Cooper’s diagnosis I was so unbelievably lost. I had no idea what to do.

Flash forward to today.3 short years later.

Cooper attends an autism Kindergarten class. An Autism outpatient day treatment program. He receives speech, occupational therapy and an aids for daily living program. He has a social worker. A crisis social worker. A financial aid worker. A case manager. Dozens of therapists, teachers and specialists. He receives medical assistance that covers diapers and transportation. A consumer support grant. He has an iPad communication device from Talk To Me Technologies. Also something I said I would never use. I could probably go on honestly.

Cooper has a village. A village that I never wanted. A village that changed our lives.

So how did we get here in 3 years.

Our story is a bit fascinating and driven by desperation. After Coop’s diagnosis we drove 3 hours home. We sat and waited. Every single day I called Fraser and asked ‘what now.’ I received the same answer for 3 straight weeks.

‘We are creating a plan for Cooper.’

And then on a Friday afternoon after waiting for an eternity the phone rang. I was home. Standing in the kitchen. Making spaghetti. I was holding Sawyer.  I answered.

And a woman that sounded 14 years old told me that if we moved to the Twin Cities she believed Fraser could significantly change Cooper’s life. She said words like intense therapy. All inclusive services. Medical Assistance is required. I heard a number that sounded like $225,000 but at the time I thought I must have heard her wrong.

It was mid-September. She said they would hold a spot for him until October 8th. We had a week to make a decision.

I didn’t need a week to make my decision. I told her we would do it. He would start October 8th. We were in.

I hung up the phone. I walked downstairs.What had I just done. I committed to a program and a move without talking to my husband.

I went into Jamie’s office and I told him we were moving so Cooper could go to Fraser. I explained the why.

And the man that fought me on every single aspect of autism said, OK.

And just like that we had a plan. House went for sale. Added a bathroom. House sold. Transferred our jobs. We moved in a weekend. I joke that we were gypsies that moved in the night.

Boom.

Little did I know we had just jumped down our first rabbit hole.