I’ve taught children with autism. I’ve read about and researched the disorder. I’ve been in very personal conversations with parents of children on the spectrum and with individuals who are autistic. There have even been times when I was part of the school team that informed parents that their child met the criteria for autism spectrum disorder.
But I have never had a personal connection with someone who is told that her child should be evaluated for autism. Until recently.
Several months ago, a young woman I know told me that her three-year-old daughter was scheduled to be tested by her school district and by the autism center at a local hospital. I was amazed at how positive she was in talking about the whole process. This single mother knew almost nothing about autism, but realized that she needed answers and solutions for her child.
This individual has been somewhat reserved around me in the past but she sought me out to share her story. She was honest with me about some of her daughter’s challenges, those behaviors that had caused her to seek help.
I was surprised when she expressed to me that she was looking forward to experiencing the ways in which her daughter would use her “amazing and unique gifts” as she grows older. I found that to be an interesting comment from someone at this early stage of the journey.
In the two months that have passed since that first conversation, this woman’s child has received the educational diagnosis “Young Child with a Developmental Delay.” Medically, she has received a diagnosis of Autism Spectrum Disorder.
Now reality and uncertainty about the autism diagnosis are setting in for this young mother of two.
The hospital suggests ABA. The preschool recommends that her daughter not have ABA because her language is fairly strong. As a retired teacher, I understand that there could be several reasons that the school is discouraging ABA. The mother has no idea that she needs to question this more, to investigate the possibilities when she has opposing recommendations.
In addition, the diagnosis occurred at the end of the school year, so the girl does not qualify for summer services. That means three months of early intervention could be lost! I hate to see that. Kudos to her for continuing to work her way up the supervisory ladder of the school district to try to get some educational help for her daughter now.
Getting signed up for support from the Department of Mental Health is a slow, time consuming task. The paperwork, interviews, and red tape are frustrating. It may take months to get approved. This is not something someone else can do for her. Yet some of the services available for children with autism can’t be accessed without this step.
Insurance coverage needs to be investigated, but there are some complications there.
This mother’s life has changed. Just. Like. That. My acquaintance is still too overwhelmed, the diagnosis too fresh, for her to comprehend that fact. Parenting always involves advocating for children. For the parent of a child with special needs, advocating takes on a whole new dimension. She does not yet understand this.
Another struggle for this mother seems to be understanding or believing that her daughter’s behaviors are a result of the autism and not willful disobedience. She told me that she is trying to come to terms with that, but at other times, things she says indicate to me that she is not yet there. Again, never having been in her shoes, I can’t imagine how long it will take for her to internalize this belief. From conversations with other parents, I think this can be an ongoing struggle for parents of children on the spectrum.
Another acquaintance and I are trying to support this young mom. Unfortunately, there is so much she has to do herself. The likelihood of getting immediate services seems unattainable. Perhaps it is not as critical as I believe it is to begin some kind of program immediately.
I imagine that if someone knew nothing about autism there would be this inclination to think, “Now I can relax. My child has a diagnosis. The school will know what to do.”
Or maybe a mother might think at first that the autism is there. It is not going anywhere. There is no rush.
I don’t know. I have never been in her position. I have not been a single mother. I have not had a child diagnosed with autism. I can only imagine.
Many mothers have talked to me about the importance of continual advocacy. They have talked about getting therapies on their own dime, with insurance, or with the help of the Department of Mental Health.
Then there are the stories of therapies that do or don’t work. Programs attempted. Programs aborted.
There is so much that lies ahead. So much this young friend can’t foresee. Little pieces of information, small recommendations, are almost more than she can handle right now.
What is the mother of a child diagnosed with autism three weeks ago ready to hear? What does she need to hear today? What can wait until tomorrow? Thoughts??
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Retirement - My New Reality 