I have spent three years wondering if my daughter’s sensory issues, language impairment, and developmental delays were all part of something bigger, like autism. When those thoughts came to mind, I would push them away, because it didn’t matter since she was already getting all the services she would be getting if she had a formal autism diagnosis. On the M-CHAT, my daughter scored as “high risk” for autism. But even with a high risk score, it didn’t mean things wouldn’t or couldn’t change. She was only 2 and constantly making huge strides in her development. I was sure that in another year, her “high risk” would become “low risk.” When she was tested again a year later, I was stunned when it came back again as “high-risk”. But people who knew her would say things like, “Don’t worry, it’s not autism. She’s waay too social.” Did I look worried?
Prior to being enrolled in an ESE (Exceptional Student Education) program in the public school system, my daughter was assessed shortly after turning 3. In the evaluation, it was noted that she did not appear to have autism, so I went forward on the assumption that that was correct, and that I needed to focus only on her sensory issues. At the same time, her differences were becoming more apparent when among her peers.
After a few months of being enrolled in the program at the local public school, I received a call from the program coordinator who wanted to discuss a recent team meeting about my daughter. She wanted to let me know about the summer program and then we got on the subject of autism and seeking an official diagnosis. The coordinator, who has personal experience as well, suggested that I take her to a local children’s hospital if it was something I felt like I wanted to know. She explained that there were pros and cons to the official diagnosis. She was walking me through it before it even happened. None of this was really news, but it was news that someone other than me thought this and was now saying it out loud.
Two days before I received this phone call, I read an article that listed the symptoms for autism in girls. By the end of the list I realized I was holding my breath, because a large number of items on the list applied to my daughter. I read it over several times and finally did a tally: I could easily apply 38 of 55 symptoms listed on the described non-definitive list. Several days before that, I watched the ten minute introduction of Sesame Street’s new character with autism with my daughter and as I watched her get enraptured by Julia, I realized they had a lot in common. So, the realization that my daughter may have autism was fresh in my thoughts when I got the phone call from the school. It wasn’t news, but in some ways, it felt like it.
As my conversation with the coordinator continued I wasn’t able to keep it cool. She noticed my cracking voice as I stumbled to find the right words and she jumped in and said, “I know what you are feeling right now. You will go through a grieving process and that’s okay.” I was silent. I listened to her speak, as I struggled to find words. Would I grieve? What was I grieving? I have known for a long time now that my daughter is not like her peers. I knew she was different, she had sensory integration issues, language delays, developmental delays – things that she was overcoming in time. There was no loss here to grieve. Was there?
After the phone call, the concept of grief bounced around in my mind for close to a week when I realized that it was the permanence of autism that was clutching my breath. I had been holding on to the idea that one day – if I did everything I could for her – that things wouldn’t always be so hard for her, because society isn’t made for people who think or act differently. In fact laws have to be written just to enforce equality for those with disabilities, because it may not be considered otherwise.
But the truth of it is, autism is a part of what makes her who she is. And I love my daughter for who she is, with all of my heart. At the recommendation of the school’s program coordinator – the first person to say aloud what had been in the back of my mind – I called the autism specialty center and scheduled an appointment for my daughter to be evaluated in later this month.