Trust and the Autistic Child

I put Lil D on the bus this morning, like I do most school-day mornings. We walk out to the bus, often in semi-darkness before the day has broken, and I escort him to the steps of the bus. The bus matron takes over from there, guiding him to his seat and attaching his harness to the seat. Sometimes he is agitated, upset and crying. Other times he is calm and eager to go. As I silently pray Aytul Kursi (a verse from the Qur’an), I wave goodbye, tell him I love him, and wish him a good day at school. He jerkily waves back.

And then he’s gone.

I have sent my son — nonverbal, unable to speak or effectively communicate his emotions —  out into the world, once again, as I have day after day for nine years. And, I have put my trust in the world to teach him, take care of him, help him and not abuse him.

He cannot report back to me if someone said something mean to him or mistreated him. He cannot tell me how his day went, or that, for whatever reason, he may not like his bus driver, or that a kid at school perhaps bullied him, or that an authority figure told him to “Knock it off” or roughly held him when he was having a meltdown. I’m not saying these things have happened.

I’m saying that if they did, I would most likely have no idea.

Trust is Impossible, Trust is Inevitable

This is the impossible, terrible, heart-squeezing trust I (and so many parents like me) must place into the world to do right by my autistic son. Today, which is the last day of April and autism awareness month, I want to spend a little time talking about trust. A lot of my writing touches upon trust issues I have with Allah, trusting that He’ll answer my prayers, putting full trust in His will and His divine plan, keeping that sacred trust even when I see my son suffering.

But, when it comes to trusting the world, well that’s a whole other ball game. Recently, a lot of people brought to my attention the YouTube video made by Stuart Chaifetz about his 10-year-old autistic son, Akian Chaifetz. Akian, who in the past had gone to school without problem and seemed to enjoy it, had been exhibiting anxious and upsetting behaviors that possibly stemmed from a problem at school. For months, his dad tried to get to the bottom of the problem and had meetings with Akian’s teachers, but was assured that everything was fine at school.

Finally, Mr. Chaifetz decided enough was enough. He put a wire on his son and sent him to school. The six hours of audio taped revealed verbal abuse, in which an aide told Akian to “shut up” and called him a “bastard.” The aides and teacher discussed how much alcohol they had drunk the night before and other improper subjects in front of Akian and other autistic students in the classroom – things that never should be discussed in front of students.

And lastly, when Akian asked if he would get to “go to dad,” a common question he asked in class (which referred to him being able to return to his dad after visiting his mom over the weekend), his teacher sternly told him, “no.” This caused a horrible meltdown. And, if you at all understand how autistic children can perseverate upon a single subject or worry themselves incessantly over something, then you would understand that being told “no,” was one of the meanest things his teachers could’ve done to him.

When Trust is Betrayed

School officials in Cherry Hill, New Jersey, where the incident occurred, called it regrettable and an anomaly. Let me tell you, this is not an anomaly. Bullying is a rampant problem receiving national attention of late, and the bullying and mistreatment of special needs kids is probably just as rampant. In fact, I would wager that we haven’t even begin to understand the scope of how vulnerable these children are, simply because they are unable to report if they are being abused or bullied, or they may not understand they are being bullied.

Just last fall, here in Virginia, my friends with autistic children were horrified when surveillance video from 2009 was released, showing a severely autistic boy who wears a harness on his bus, just like my son, was beaten and choked by his bus matron. His family sued for $20 million. But, no money could compensate for what that lowlife did to this child.

I acutely remember the feeling of nausea and fear after watching that video. That day I drove to my son’s school just to check on him. Just a few weeks before, we had had our own suspicions about a new bus driver Lil D had, as we noticed how upset all the children were on the bus and how unfriendly the driver and matron were behaving. Although Lil D had no way of telling me, I sensed he was unhappy, that something was up. I made my complaints to the county’s Department of Transportation.

I must have not been the only parent suspicious and complaining, because within a day I saw the special needs transportation coordinator riding the bus with the kids, and by the end of the week, a new bus driver and matron were in place. We were never told what the problem was. But Alhamdulillah (thank God), a solution was found.

It’s not easy teaching or caring for autistic kids. As a parent, trust is an issue I have with myself. Behavior problems have always been a constant issue with Lil D, and it can be very trying to deal with him. In the past, I have been short tempered and said things I have regretted. Early last week was a low point for me, when Lil D had meltdown after meltdown, hitting himself and crying. I tried my best to bring him out of it and to attend to the other children. But, by the end of the night, I was in tears, frustrated with the situation  and angry at myself for losing my patience.

There’s not a parent out there who hasn’t lost their cool with their kids. We are all human. When you have a special needs child, that complete trust they put in you can be unbearably hard to manage at times. Caring for them, teaching them is can sometimes feel like an insurmountable task – but this is our reality, so we do
it as best as we can. So, I certainly sympathize and hold great respect for the special needs educators who work with our children.

But, these educators cannot afford to lose their patience with special needs kids, not even once. This is their job, and they are paid to educate and look after these children. As hard as this job is, there is no room for error.

At the end of the day, it comes down to trust. Do we trust educators? Do we trust this messy, imperfect, difficult, unpredictable world to do right by our children? How do we know that what happened to Akian or to the  Virginian boy won’t happen to our child? I check my son’s body every night from head to toe to make sure there are no errant bruises or scratches. I chart his behaviors and emotions to keep track of what may trigger them. I communicate and check in with his teachers as much as possible. But there’s only so much I can do.

In the end there is only trust.

About Dilshad Ali
  • Amyjuliabecker

    Dilshad, your post makes me think about the nature of vulnerability. Kids with special needs are all the more vulnerable than the rest of us, which I think makes them open to great danger and also open to great love. I hope and pray that Lil D will experience great love. 

    • Dali

      So true – open to great love. Your positive note makes me feel better.

  • http://www.facebook.com/doctorankenman Ralph Ankenman

    Severe meltdowns in autism may be Immature Adrenaline Systems Overreactivity (IASO).  IASO is not a mental illness, nor a component of one. However, autism can make a child more susceptible or prone to Immature Adrenaline Systems Overreactivity.
    IASO is a new diagnosis not yet covered by DSM which has been very successful in helping patients manage and eliminate such behaviors. The regimine is based on adrenaline acting medication, not psychiatric drugs.
    Search for “Hope for the Violently Aggressive Child” for more information.


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