The Yoke of Autism

I made a mistake of uttering out loud what I was thinking in my head the other day. And, while I don’t feel especially guilty about what I was feeling at the time, I think the comment has unintentionally left its mark – for better or for worse, amongst my loved ones.

A few nights back we got a call from Toronto that a beloved elderly family member, who’s health has been in decline for a while, had taken a turn for the worse. It was one of those calls you know is coming, yet knocks you over when it comes. Things look bad. We just want you to know.

Immediately our family shifted into crisis mode. OK. Some of us have to go to Toronto. As the discussions began and we debated if my in-laws should just drive the 10 hours to Toronto, or is there any hope that we could find a halfway decent air fare, I hauled out some meat from the freezer to thaw and began making iftaar and dinner preps.

It was barely an hour and a half before we were to break our fast, and we had plans to go out to an iftaar that night, but that certainly was not going to happen now. As I immersed myself in food preps, my emotions took over. This family member who had taken a turn for the worse, well he was like a grandfather to me growing up. And I wanted to go and see him. But that wasn’t a possibility.

“You know,” I suddenly remarked, “my hands are tied. If things were different with Lil D, I’d just say, let’s pack the kids into the van and we’ll all drive there. It’s summer break, and other than summer school, no one has any obligations. But I can’t. I’m majboor (hands are tied). I can never just drop things and go. Ever.”

My in-laws just stopped in their tracks. I rarely, if not ever, verbally reveal this frustration I sometimes feel, this resentment I can have towards Lil D’s autism and its juggernaut hold on our lives and our decisions. Sometimes it hits us, knocks us flat on our feet during acute moments – this inability to get up and go, to do the million things we want to do with Lil D and the whole family.

But those are moments. Truly, we’ve been living this life for so long now, that seldom do I think this way. For the most part, we’re good with our life as it is. When we are able to all go somewhere together, we do. When we can hire someone to come with all of us and assist Lil D, we do. When our family is in a position to help us, we ask. When it’s better for my husband or I to stay home with Lil D and the rest of the family go do what they need to do, we do that.

Sure, sometimes I may feel left out or upset at the cards we’ve been dealt, the myriad of things Lil D has to deal with, but it is what it is. Living the Fractured Family life is what we’re used to, and though we chafe at the yoke from the time to time, Alhamdulillah, we don’t wallow. For very long.

Yoke? Did I call autism a yoke? Yes, yes it is. Lil D is the gift. He, as he is, who he is, as an entire person, is a gift. I don’t resent him for a second. I wouldn’t be who I am today without him. But, you might say, he is who he is with his autism. Well yes, and no.

Yeah, I (and he) could definitely do without it. That is how I feel today.

About Dilshad Ali
  • EnoughFish

    I am autistic. I am autism. And I am no yoke. Burden not me with your typecasting.

    • Pohjie

      She is not talking about you. She is talking about herself and her life. She has every right to express herself, as do you. Try not to take it so personal and then it doesn’t hurt.

      • EnoughFish

         She doesn’t have a right to call my humanity a burden, no matter what the personal problems of her son are.

    • Dali

      Dear EnoughFish. I’m sorry to have pained you. I know this is a touchy thing to write about. I don’t view my son, or any autistic person as a yoke. I do understand that autism is part of who he is, so if his condition frustrates me from time to time, does that mean he is the source of frustration? No. It’s complicated, and perhaps later I’ll figure out how best to express it. He is who he is with his autism, but he is more than it too. So although it makes me a fallible mother, I do get frustrated and see the condition as a yoke sometimes, but I never resent him. These ate temporary lapses

      • EnoughFish

         Dali, here’s one message that I want you to understand. Look at the information people have but don’t parrot all the time. Look at the difference between ‘mild’ and ‘severe’ autism. In the severe end different single gene causes have been identified with no relation to anything else. We should stop calling all these similar things Autism.

        • Wkdkween

          They call all of them Autism because of money. Insurance will cover autism, but not if it’s not called autism, so, now we Autism Spectrum Disorder to cover both ends and the middle and should be covered by insurance

          • EnoughFish

            So people have faked something because of money. Great. And people are also thinking of wiping out my people because of what a minority lives through who aren’t even connected to me.

  • Jborrelli

    You are a strong and brave mother.We too have an autistic daughter and I often feel the same way.

  • Maryann from Matthew’s Puzzle

    It is extremely difficult dealing with autism. My son is a treasure, but I kid you not, his autism is not. The difficulties he has scares me. I can’t be there for him forever and I fear he will not be able to live on his own. I want so much for him, yet autism makes everything a million times more difficult. My son is one of the bravest people I know, and he has no idea. He just is. I have felt your pain. I know how hard it is to hear others complain about what I would consider the mundane or even a blessing. Continue to do your good, it will pay off in the end. Congratulations on being such a devoted parent, many can not do what you are doing.

  • Colleen Purdie Fuller

    Thank you for this post! I am just beginning a Master’s thesis on the stress experienced by parents of children with Autism.  We struggle daily to make our children’s lives as full and rich and successful as possible, and almost never express what we are feeling. Thank you for speaking your truth.
    @EnoughFish, please don’t take this personally.  You are much more than Autism, and you should try to understand that the yoke of caring is real, and is worn willingly and with love. Choosing to love and unfailingly nurture anyone is choosing to wear a yoke of one kind or another.  There is no typecasting involved here.

  • Valerie

    I stumbled across your blog today. I am a parent of a child with autism in Australia.

    The pressure to pretend that there is no downside to the challenges that autism brings to all of our lives is strong sometimes. It can come from inside ourselves, it can come from our families, it can come (often most strongly and anonymously) from autistic people who object to being considered a difficulty.

    As much as I understand and respect all these views, I think we are doing everything a disservice if we deny that along with a challenge comes difficulty. It does. It doesn’t mean it’s bad. It just means it’s difficult. Like lots of things in life.

    I hope your family are as strong as possible as you face this new transition.

  • aspieshouldnobetter

    Autistic behaviors are not symptomatic of some individual deficit or disorder.These behaviors are emergent of the autistic’s capacity to experience a socialenvironment that is incapable of recognizing any capacity outside of normalhuman understanding.

    Autistics do not utilize the same neurological processor as neurotypicals.
    The neurotypical processor perpetually seeksconfirmation of, or detects deviations from, its previously storedinformational content. Neurotypical intelligence consistentlyself-references and projects the informational content stored in itsbrain to alter or manipulate the external environment.  In addition,it assimilates information that has been previously collected andstored in the socio-cultural environment to serve its internalperception and definition of reality. Strictly speaking internalizedinformational content is not intelligence.  The internal processingand external articulation of informational content represents theminimum expression of human potential, and yet is considered thehighest expression of individual neurotypical intelligence.


    • EnoughFish

       Could you please stop putting everything in to spin, pseudoscience and buzz words?

      • aspieshouldnobetter

         Could you be more specific about your exact issue with what i shared.  It has been my experience that many aspies take great exception to information that is beyond their understanding.  It is my sincere desire to help you in any way I can.

        • EnoughFish

          “It has been my experience that many aspies take great exception to information that is beyond their understanding”

          Oh this is just pathetic. I get annoyed with your bunk, so you make some comment implying I have limited mental capacities. You are a sick person. Go away and learn some humility you anti-autistic snake, and quit playing dumb.

  • Nancy French