Atypical Symptoms of Autism Meant My Daughter Went Years Without the School Support We Needed
My experience as a parent who has two children with autism has been difficult, but not only because of their symptoms related to the diagnosis. The experience of requesting support, accommodations, and services has far exceeded those challenges—in large part due to a lack of understanding of neurodiversity and effective training among educators.
While I had significant challenges with getting a diagnosis and supports for my firstborn, Z, the obstacles and barriers I faced in obtaining services for my younger child, M, have been even more difficult—because her symptoms were significantly masked. I’m struggling to accept that my daughter was almost 12 when a school finally recognized the source of her needs—despite my attempts to advocate for her. I’m deeply disheartened that my requests to identify M’s needs and provide necessary services were repeatedly denied by teachers, doctors, administrators, and others, assuring me that she was “fine” and no accommodations or services were necessary.
M has always been social. I could take her to a swimming pool, and within minutes, she would have a new friend or two, and they’d play together until it was time to leave. She enjoyed her classmates and happily attended play dates and birthday parties. The invitations were few and far between, but I often tried to rationalize her lack of close friends with the shortage of girls to connect with.
Over the past few years, however, her challenges became more apparent. Not fully understanding her needs or the cause, I asked the school to conduct evaluations. Several times, I was told “no,” that M was “doing fine in school”—even though I knew that she wasn’t. She’s an internalizer and was experiencing major stress (far beyond what we could imagine), which I attempted to express to her teachers, therapist, social worker, anyone who would listen. A limited evaluation, based mostly on observation and teacher interviews, had mixed results. M and I expressed some major concerns and challenges, but her teachers had little to none. She was not approved for an IEP or even a 504 plan with accommodations, as the team saw nothing in M’s evaluation that warranted them.
As the evaluation progressed, staff expressed their concern at such a lack of insight by school personnel in the previous evaluation that clearly missed some obvious needs, but more importantly, missed an opportunity to address them earlier.
COVID-19 abruptly brought kids home from school, exacerbating M’s challenges. She found it very difficult to engage in distance learning at the end of 5th grade. We didn’t push it, as we were all experiencing significant stress with the transition to learning and working from home. But as the months went on, and it became clear 6th grade would begin with distance learning as well. I reached out to the school social worker at M’s new middle school to express my concerns and requested an evaluation with a more comprehensive look at M’s needs than what was completed in her elementary school. M was granted another evaluation last fall, after an initial refusal due to challenges with conducting testing and evaluations during distance learning and with strong advocacy on my part. As the evaluation progressed, middle school staff expressed their concern at such a lack of insight by school personnel in the previous evaluation conducted at the elementary school that clearly missed some obvious needs, but more importantly, missed an opportunity to address them earlier.
M was approved for an IEP using the autism spectrum disorder criteria, along with emotional behavioral disorder (depression), and is also eligible for DAPE for special accommodations for physical education. They nearly approved her for all three criteria studied, which would also have included “other health disorder” (ADHD), but didn’t have enough data to add that component due to distance learning.
Needless to say, this result was both validating and disheartening. As a parent who is also a social worker, I work tirelessly to try to provide my children with what they need to be successful in school, and I moved my children to a new school district from their community school for a gifted program that was highly recommended. When we made that move, I felt confident that the new school district would be prepared to work with children who were gifted, but I was concerned that my children’s special needs, which were not yet fully understood or diagnosed, would be ignored. I was assured that the school staff would be committed to providing the support my children needed—but I spent three years without the support, understanding, or accommodations M needed.
With the approval for an IEP, the middle school team worked hard to determine how M’s needs could be addressed through accommodations and additional support to counteract the harm that was done—especially the harm caused by her elementary teachers, who repeatedly told M and myself that any strategies she used to cope with classroom stress, such as fidgets or a comfort item, were a distraction and not allowed to be used in the classroom.
A school team with a greater level of understanding of neurodiversity would ensure that schools are more effectively prepared for working with children who are being diagnosed with neurodevelopmental disabilities in growing numbers.
But our challenges haven’t subsided; distance learning resulted in more absences in classes from M than those she’s attended; she failed all classes but science this year. The only reason she completed science assignments is that the school social worker worked tirelessly with her to get her to do “something,” and it’s the one class she was willing to work on. For math, she begged me last spring to demote her to grade-level math, rather than accelerate her as would be generally done for children in the gifted program. She said she hasn’t done math in years, relying instead on students in her math group to complete assignments, and refusing to do work at home. So now she has a major fear of doing any math because she feels like a failure.
I’m sharing all of this not just to express my anger and frustration—though that is evident. I want to try to help families have a better experience. I believe that children like mine would be better served if more educators and staff were trained on identifying and working with children who have autism, especially those who present in atypical ways. Training would enhance their ability to respond to the needs of children who internalize feelings, children with ADHD, and children who are identified as “twice exceptional” or children who are gifted as well as experience a type of learning disability or other disorder that impacts their abilities. A school team with a greater level of understanding of neurodiversity would ensure that schools are more effectively prepared for working with children who are being diagnosed with neurodevelopmental disabilities in growing numbers. With additional training, I know that many children in years to come will benefit from teachers and staff who have a greater understanding of children with special needs and who are more responsive and supportive to them.
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