Diagnosis Day Part Two

This one makes me nervous. If you are an autistic adult whose parents don’t accept your neurodiversity, I’m sorry. This is not meant to be a tale about how I got the short straw, it is not meant to be self pitying. My lion is the source of the world’s magic to me. He always has been. I just want to be a good mom.

If you are a parent, you know that deciding to have a baby is a selfish decision and raising a child is a selfless act. What I mean is that everyone has an idea of what kind of parent they will be. Everyone fantasises about what their children will be like. The switch from the rosy fantasy to the real life can be a bumpy one. Some people are heartbroken when they discover the assigned gender of the baby is not the one they had hoped for. Dan Savage’s mother was not great when he came out- but given time to process, she became his biggest ally. It is just a hard fact of life that the change from the dream to the reality comes with some mourning. I don’t want to police the feelings of my past. I am not the person I was four years ago, when this story takes place. I do want to be honest so that other parents know that it is ok to feel your feelings. Just please make sure you ask for help so that you can get back to being your child’s protector and guide.

A warning: This one is going to get dark. There is mention of suicidal thoughts. Before we begin I want to be clear: My period of mourning did not for a minute include no longer loving and wanting Ryan. I adore this child with every fiber of my being. In my darker moments, I wished that he could be neurotypical. I’m not proud of that. I understand now that Autism is not just part of Ryan- it is what makes Ryan my wonderful little Lion. I don’t want Ryan to not be Autistic. I want the world to accept and love my autistic son. Ryan, if you should find this in the future, know this: I love you just the way you are. I loved you the moment I knew you were growing inside me. I loved you when I first saw you. I have loved you every second since then. I love you so very, very much. I am proud to be your mom.

When other parents talk about Diagnosis Day and the struggles that can follow; I don’t think about sitting in a doctor’s office watching my child play or stim while a professional tells me about autism. I think of the moment that I fully understood what being autistic would mean for Ryan.

The first time someone actually said “Autism” concerning Ryan, he was 4 years old. He had begun attending a small infant school near our home. It was a week or two into the school year, once the SENCo (Special Education Needs Coordinator for you back home in the states) had time to spend with him that she called and asked “Have you heard the term Hyperlexia? It’s a syndrome linked to autism. I think Ryan fits the description pretty well.” Now, I don’t know if she was supposed to share those thoughts with me. I am sure it can be a fine line to walk when you are trying to educate a child and support their carers to not give the impression of diagnosing a child. I am sure it could have backfired on her if I had not been desperate for someone to point me down a road to understanding Ryan. I’m so grateful she took the chance.

Hyperlexia did fit Ryan well. It describes a child who is a gifted reader and also has a language delay. I immediately remembered a day when Ryan was just over 2 years old. We were in Ireland, at a small playgroup and Ryan spotted a sign. Completely on his own, he sounded out the word “Samaritans. ” That is not the earliest example of Ryan reading but it is the most dramatic, mostly because it was the first time he demonstrated the skill in front of strangers. It was also the first time that I realized that it was an atypical skill. Yes, yes. Obviously, most 2-year-olds don’t read, but when it was just us in our little bubble it didn’t seem out of the ordinary at all.

From the moment I began looking into hyperlexia, I knew Ryan is autistic. The knowledge did not trouble me. In fact, I was excited. I finally had a road to go down. I could make a plan. I could educate myself to be a better advocate for my son. I could begin doing my part to make the world a better place for autistic people.

What I know now is that I had fallen into the trap that is set up by what is easily known about autism. We all know about autistic children, but we so rarely talk about autistic adults. What this does is create the idea that the signs and markers of autism disappear with age. They don’t. An autistic adult still needs support in navigating our world. Even the most successful (by society’s standards) autistic adults are still autistic. Usually they have learned to mask their autism in public- often with devastating consequences.

One more time for those who need to hear it: Autistic children grow into autistic adults.

I know that now. I’ll shout it whenever I can now. The moment I understood it, though? That was when I was on the sidewalk not far from Ryan’s school. He was having a meltdown that had probably been building for a while. I was struggling to keep him from darting into traffic while also dodging his surprisingly powerful blows. Up until this point, all of his meltdowns had been the same for me. It was my instinctual reaction to mentally remove myself from the situation. I can allow my body to work on autopilot to keep him safe while my mind kind of moves outside my body to focus on remaining Ryan’s calm port in the storm. Matching his big emotions with calmness is the best way to help him find his way back to us.

On that day, as my physical self worked my mind just… understood, and in that moment I broke. Ryan will always be autistic. As he grows we will teach him methods for managing his emotions. We will encourage his special interests and will celebrate each new skill. He will grow, he will learn, he will change. He may go on to university. He could get a driver’s license. Hopefully, he will find work he loves. He might find a partner. He could choose to have children. He will still be autistic, and unless things change, he will struggle to be accepted.

That day, by the time Ryan found his way back from the meltdown we were both on the ground sobbing. For Ryan, at least outwardly, he was fine once we got home and he had a snack and settled in with his favourite YouTube videos. For me, there were weeks ahead of continued spiraling.

At first, I struggled alone. I was ashamed of myself. When I became pregnant I worried endlessly that my own troubled childhood would mean that I could not be a good mother to my children. In the dark time following my understanding, I convinced myself that I had finally proven those fears to be correct. The broken part of my brain began insisting that I was not worthy of being Ryan and Aurora’s mom. The rest of me knew that I could not live in this world without them. So I started planning to end my life.

Thankfully, there was still a part of me that knew to find help. I reached out to family and friends. I leaned so heavily on my support groups that at times it felt like they were breathing for me. I began telling myself that my only job was to survive each day. I clung to Ryan and Aurora who were and always have been the bright spot in any dark situation. I swam in my grief. Slowly, I began to get better. Then, one day, the meetings and assessments and questionnaires finally came to an end. I found myself in a doctor’s office watching Ryan twirl while a professional handed me information packets about autism. I was ok. I was good. I was ready to begin this journey to Ryan’s adulthood.

Tomorrow’s topic is learning from Autistic adults. Sending love to you all.

One comment

  1. Your willingness to share your dark thoughts can be and are a source of self healing for others. Ryan will probably be proud of you and your writings as an adult when the time is right to share these.

    Like

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