Tell It Like It Is – On Being Asked What It Is Like to Have an Autistic Child

Earlier this summer, a well-meaning acquaintance I was chatting with at a birthday party asked me an honest question — “What’s it’s like to be a mom of an autistic child?”  She wasn’t being nosy.  I happen to like her and know that she was genuinely interested in my experience.  But what I saw in her eyes was pity.  She even teared up while we were talking.  Those of us with special needs children know that look.  I called it The Look of Tragedy.  Again, she meant no harm.  So, I got to thinking.  What is it like to have an autistic child?  After all, they come in all sorts of shapes and varieties.  I’m just starting out on this journey, yet many have seen their children through to adulthood.  Some of our children will be self-sufficient.  And some will live with us or in a group facility for the rest of their lives.  So, I admit that I cannot answer that question for everyone.  But I can answer for me.  And, in that answer, I will likely be speaking for other parents of other very special children.

So, here it is.  Here’s what it’s like:

1.  To begin with, it’s [a kind of]* death.  No matter how much you plan to allow your children their freedom to achieve their own dreams, quite naturally you have a few dreams for them as well.  You dream of birthdays and holidays.  Santa and presents.  Playing dress-up, doing arts and crafts, playing Candyland, dance classes, Boy Scouts, sleepovers, team sports, high school graduation, getting married, and having children of their own to love.  And, though many of our autistic kids will grow up and have and do just those things, more than half of them won’t.  At least not without a great deal of assistance and likely not in any resemblance of the typical joy of those things.  So, you mourn.  You mourn for what might not be.  You mourn for what you and they are missing now.  And, later, you may mourn for what will never be.

2.  Despite the death of the dream child you envisioned, you are deeply in love with the child you have.  He still does adorable things you want to share with others.  He loves you too, but the rest of world won’t always get to see it.  Because when he is away from home, he is not himself.  He is not the happy, affectionate child who holds your hand, snuggling, and gazes at you adoringly while pulling your hand to scratch and rub his back.  They won’t get to see him at his most charming and you will know they are so very glad they aren’t in your shoes.  You will see pity in people’s faces.  And they won’t ever understand the very real, profound joy this child gives into your life every day.  Part of being a parent is pride in your children.  People won’t see what you are so proud of.  And that can be a lonely feeling.

3.  Guilt assails you from all directions.  You want to throw a beautiful birthday party for your child.  But he may not notice.  He may not be the least bit interested in the presents, and you will dread any look of disappointment on the giver’s faces.  He may be struggling to get down out of your arms during the party, and there is an air of sadness just beneath friends’ and family’s smiles.  So you consider not having a party.  You consider not taking him to others’ parties.  You want more than anything to give your child the experiences typical children have and feel guilty when you don’t.  But sometimes it is simply too overwhelming for you both to undertake it.  Therapists want you to spend hours doing activities to help him, but you also have a job, perhaps other children who need you too, and you need some downtime on occasion or you’ll go insane.  So it seems you can’t ever do enough for him.  The guilt is a killer.

4.  You live in a constant state of uncertainty of the future.  Yes, of course none of us knows our future.  But, if you have a typical child, you can be reasonably confident he will have friends, self-sufficiency, and love.  You know who to leave things to when you die.  But if you have a child with autism, you won’t know how to plan your estate.  Do you set up a special needs trust?  Do you leave it all now to the one typical child who can use it?  Because lifetime care for your autistic child will just drain it.  And what if he grows to do well and is able to care for himself?  Because you can’t yet guess what will be, every option is insufficient.  Uncertainty can affect every part of your life.  Should I settle here in this city or plan to relocate to a city with more intensive care for his needs?  Will he ever talk?  Will he ever be toilet trained?  You just won’t know until it happens or it doesn’t.  And you live with the fear that one day your then-elderly, vulnerable child will lie sick or dying without the comfort of someone who truly loves him.  Anxiety runneth over.

5. Spontaneity is a thing of the past.  You can’t just get up and go.  You have to determine whether there is an escape route from any new activity or location.  You have to pack things to distract him if he becomes upset.  You have to determine if foods he will eat will be present or if you will need to pack his meal.  If he isn’t potty trained, you will worry about where you can take him to change him that will afford you both some dignity.  Everything – everything – must be planned and considered.

6.  You begin to grow thicker skin.  Because people will and do stare.  They will stare in disgust, thinking he is simply badly behaved.  They will stare in curiosity, because that is the nature of man.  They will stare in horror or pity, because “there but for the grace of God go I”.  People stare.  And the thing that will come back to haunt you are memories of when you, also, made a judgment about another person in public.  Righteous indignation mixes with humility and all you want to do is get out of wherever you are as soon as possible.  But you can’t escape everyday life.

7.  You grow weary of everyone else’s opinion.  Because there are so many of them.  There are those who are certain they know how “this” happened.  There are those who are certain they know how to “fix” him.  There are those who don’t think you do enough.  There are those who believe you to be a saint.  There are those who believe your child’s very visible difficulties allow them to have an opinion over your finances, his education, your marriage, and even your decision to bear another child or not.  Opinions abound, but your patience may not.

8. But mostly it’s like love.  A love that you, if you are a parent, can probably imagine.  And a love that, if you don’t have a child born with a bulls-eye in a big, bad world, you can’t.  Unconditional doesn’t begin to cover it.  Limitless.  Earth-moving.  Making you question everything you know to be true about God and man.  And that kind of love will haunt you every moment of every day.  You can see it just behind the eyes of every special needs parent on the planet.  We are filled with a love we never could have predicted.  We are filled with fears we never could have imagined.  We are, quite simply, at capacity most every day.  And, yet, when inevitably called for, we find that capacity expands.  We aren’t better parents than you.  We aren’t saints.  And our children aren’t lucky to have us.  We are lucky to have them.  Because, despite all of these very challenging aspects to having an autistic child, none of us will walk away from this life without having grown – merely from having loved them.  Having become more than we thought we could be.

No, this – like many challenges one never asks for – isn’t easy.

But, I assure you, these children are worth it.  :)

*Later I decided to clarify this statement.  As it was, it may have implied to some that it was equal to the literal death of a child — which it is not.  I meant it more as another kind of death, similar to divorce, estrangement, foreclosure, prison, and other profoundly life-altering experiences for which one goes through the stages of grief.  

96 thoughts on “Tell It Like It Is – On Being Asked What It Is Like to Have an Autistic Child

  1. cpkidsmountainclimbers

    Many of these points are relevant to special needs kids/parents of all types. My 2 1/2 year old son has cerebral palsy – last year Christmas shopping was a nightmare, every shop assistant and every other person in the queue would ask what Harry had done to his leg (and why he needed to wear a plastic boot). When I responded saying he had cerebral palsy I got that look you described “the look of tragedy” followed by much awkwardness and averted eyes as they stumbled with their words and told me very quickly how cute Harry is and how he’ll be fine and walking in no time – you could almost see them praying to be served next and be saved from the conversation with the special needs mum! I am not embarrassed he has CP, so they shouldn’t be either.

  2. Sandy Tilton

    Well, I don’t think you’re a saint. When I look at you I see a parent. You are a wonderful parent. I have witnessed you with your children during times when they are happy, sad, having tantrums, whining, and being silly. You are giving them a normal childhood, if there is such a thing. Your lives have all been a bit crazy lately but even that is part of a normal life.
    As for your son not playing with any gifts, might I remind you that I had the perfect gift in mind but YOU gave me the stink eye when I mentioned giving him clothes hangers for his bithday. I can understand why you didn’t want him to have them but I know he would have played with them. Just saying…
    All is well my friend. No matter what comes up you will handle it with grace and dignity On the off chance you are like most people and you mess up, you will do so Scarlett O’Hara style, “After all, tomorrow is another day.”

  3. Neil N

    “We are, quite simply, at capacity most every day.  And, yet, when inevitably called for, we find that capacity expands.  We aren’t better parents than you.  We aren’t saints.  And our children aren’t lucky to have us.  We are lucky to have them.  Because, despite all of these very challenging aspects to having an autistic child, none of us will walk away from this life without having grown.”

    This is as good an explanation of what it’s like to be a special needs parent as I have ever read. Excellent, excellent post. Bravo.

  4. ellen roberts

    Those of us who wonder what it must be like really appreciate your honest assessment of both the positives and negatives. This is a great piece and show help bystanders get past the pity and into the reality of love.

  5. Lynne Harrison

    All of this is true. I know, I’ve lived through it all and my child is high-functioning (Asperger’s Syndrome). I remember the birthday parties I organized with the whole class invited and the pain I felt when he didn’t get a single return invite to peers’ parties. I remember leaving a full shopping cart many times in the supermarket because I had to pick him up off the floor in mid-tantrum and make a dignified departure. I remember well-intentioned friends asking,” where do you draw the line between normal and not?” with the implied meaning that perhaps I was just indulging my son and he was just a normal kid. I valued her friendship enough to not have my own melt-down at her insensitive comments and always offered solid reasons on where and why you draw the line.
    As I write this, my AS son is settling into his freshman year at a small liberal arts college in Vermont. He’s loving it, making friends and is outgoing and academically motivated.
    I feel privileged and lucky to have raised him and am proud of his accomplishments.
    It was not an easy path and, but for the small private school he attended, it might have been a very different outcome. I advocated for, and secured a placement at a very small school for bright kids with learning differences, where he flourished for seven years (middle and high school), paid for by our school district. This is why I choose to advocate for children. I’ve seen the successful outcome for my son when given the right tools in the right place. As his mom, I’ll probably always worry about him and I realize I’m luckier than many other parents of ASD children. But I will recognize your profound joy in your child and I won’t stare at you in pity in the store when your child’s having a melt-down. In fact, I just might ask if there’s anything I can do to help!

    1. lybliss

      your comment resonates with me as my son is high functioning aspie.. so many times I have felt the judgment of “what is normal and what is just self indulgence?” If only those people knew what goes on behind closed doors! High functioning is a blessing but also rides so close alongside ‘normal’ that many think we are being over protective indulgent excuse makers. My long look is not pity either, it is ” I was there last year or last week, you have all my admiration and love”

  6. Curtis Lindsey

    I find it’s usually co-workers that ask. Ones that either have children and are trying to relate, or ones without who are thinking of starting a family but are struggling with “what-if”. And to be honest, it’s hard to think of yourself (and your child) as an example of the worst case scenario. Instead, when these opportunities arise, I answer with an analogy.

    Being in IT most of my co-workers are not an overly sociable bunch. So like all good teachers I try to put it in terms they understand.

    “It’s like running your PC without a mouse. You know the computer is the same, you just need to learn to interface differently. You get really good at the little hotkeys no one really bothers with anymore and its a wonder for your friends to watch. But in the end, you just have to be patient because you know it’s going to take some extra time.”

    Unplug your mouse sometime and let me know if it feels oddly… familiar.

  7. Jen

    I can’t said I’ve read a more accurate article describing everything I’ve ever experienced since our son’s diagnosis almost two years ago. And I feel as though we may be doing this again as our two and a half year old is not talking yet, and has a few quirks. I sat last night in my living room and cried because I don’t know if I can do this again, and we are expecting again (a surprise, not planned), so now even if I make it through a second time, can I watch another child succumb to this disease? I love my son, he’s made leaps and bounds, and he has lots of siblings so I know someone will take care of him.. but yeah. The finances. Care when he’s older if he needs it, how much will he need? It keeps you up at night. And we lost a lot of friends after his diagnosis. It was like people were scared of us. They didn’t understand it so they just ignored us.

  8. Mary

    This is great for children with other disabilities also- I have a child who is mentally challenged, as well as one with Autism. I can relate this article with both of them. Thanks so much for writing this article, and for sharing. If only there was a way to “make” other people read this, so that they understand. But there is no way to do that.. lol !

  9. Stacy Duval Woodruff

    This post sums it up perfectly. The “Look of Tragedy” is what gets to me. When somebody stares, and you can see that look in their eyes, I just want to shake them and yell, “It’s not an effin tragedy, y’all!” I prayed for this child, I bled for him, I went through hell and back to get him. So when people give me the Look of Tragedy, I just wish they could understand that he is everything I ever wanted, and so much more.

  10. Kris

    Oh, how I see myself in point 3. The guilt for always feeling like we can and should be doing more to help our son, no matter how much we are doing for him and what else we are juggling. This really does speak to the experience of all parents with “different” children. And point 8 actually took my breath away. We are at capacity with both love and fear every day, and it makes us more than we ever could have been. Bravo for finding the words for what we all feel.

  11. Bryant's Grammy

    As always, you nailed it…eloquently, accurately, and succinctly. Should be required reading for every member of the human race.

  12. Lynne Pardi

    Thank you, thank you, for this piece! I can honestly say that every word resonated with such profound truth. I have read many accounts written by parents about raising and loving autistic children, and have found comfort, wisdom, and understanding in nearly every one; but, yours, YOURS, I plan to print out and keep!! As another reader commented, “You nailed it.”

  13. Niksmom

    THIS. This captures it so beautifully. Not just for autism, either. Thank you for such a wonderful piece of writing from your heart. I’m going to share this with my family and friends who, though they think they get it, really don’t quite understand.

  14. Denise

    I have been reading your blog for quite some time now and this is the first time I have commented. I too am the mother of a special needs child. Reilly is our first born, 11years old, and he left this morning for his first day at middle school. Reilly has ADHD, Mood Dysregulation Disorder and ODD. Your ability to put into words so much of what I feel about and for my son is like nothing I have ever set my eyes on before. Reilly started early intervention at the age of 15months for a mild speech delay which then evolved into noticing his gross and fine motor delays, low muscle tone etc. That began my new career in becoming an ADHD specialist. I am a nurse practitioner so delving into researching my son’s “problem” was not only natural for me but almost obsessive- ok not almost. I can’t tell you how many books I have read, workshops I have attended, and school meetings (he has a 504) I have ‘fought’ like a crazy person on his behalf for. Although he is not autistic the similarities between ADHD and autism are astounding. And yes I have even read a book about the similarities between the two. A few examples being – difficulties with
    social skills, easily distracted, difficulty maintaining eye contact, unaware of surroundings, emotional regulation issues, sensitivity to certain foods, frequent comorbid diagnoses of allergies, asthma, and eczema. Low tone, speech delays, concrete thinking, etc – I could keep going. I understand the difference between the two (ADHD and Autism)
    in their severity is not comparable yet I do struggle with some of the same issues as you mentioned here. What I realized as I read your post was that some of the things have slowly improved with time, which I assume has to do with continued development of his frontal lobe, and hopefully interventions (accommodations at school, use of medications, using parenting techniques learned through various workshops, books and counselors, and learning how to optimize our home to suit his needs-gym mats to roll on when needs sensory input, homework spot designed specifically for him, etc). Yesterday he refused to leave the house, having a one hour tantrum (long story), and I sat their having a woe is me pity party in my head about having a child with a mental illness (that is the mood Dysregulation disorder part-it’s kind of the diagnosis child psychiatrists are giving to kids who almost fit the criteria for bipolar d/o but not quite and with better lifetime prognosis – so they say- mind you this diagnosis does not officially come out until the next DSM version is published next year and the research thus far is merely retrospective studies identifying those who were diagnosed bipolar in childhood but appeared to “outgrow” the diagnosis by adulthood-they are now saying those kids were probably suffering from this mood Dysregulation d/o. Needless to say the treatment is the same – antipsychotics and mood stabilizers. And the medication management of charting moods/behaviors/tantrums, calling the doctor to report new side effects of hallucinations and delusions on many of them and monthly visits
    to the psychiatrist are enough to do me in some days. Then to have a well meaning friend or acquaintance make a comment about his weight gain and I answer that Abilify (antipsychotic I agreed to put my little baby on last year bc his rages were so out of control) caused him to gain 25 lbs in 2 months and he hasn’t been able to take it off since then- let’s just say I have seen that “look of tragedy” myself. I have received that same look many years ago when his ADHD stimulant medication made him so thin you could count his ribs and someone asked me a question out of concern about his weight/health. And not that I ever
    have to divulge those specific details like that but over the years I have decided that I am not going to make my family’s mental health problems a secret or shameful. Just as I would never want to see anyone feel shame over being diabetic, having asthma or food allergies. Those things might make those kids feel and be treated differently – needing special medications & monitoring, not being able to eat the same things as other kids, having to possibly avoid certain activities (severe asthmatic for example). Overall these types of differences are being seen more and more in the community – specifically at school – and others come to see these differences as not the “tragedy” they may have once been seen
    as. So I am going to stand up for my son and for other children who will follow behind to make his “problems” seem less tragic and more just a part of us all being human beings who are different. I feel that the more I can do that while enduring the “look of tragedy” and the more I can help to destigmatize mental illness by educating others any chance I get the closer I might come to one day seeing a “look of empathy” – not pity, not tragedy, not fear. I feel very strongly that the more we can
    educate others about our differences (and yes my husband and I both have ADHD and mood disorders) and make people a little more empathic, the more we might start seeing a bit more acceptance of those differences and understanding. So when my son has a birthday party, opens a gift only to realize it is not the exact beyblade he had asked for, throws the gift down, goes to his room and sulks – and depending on – well I’m not really sure anymore – he might even break or punch something in his room, all because he didnt get the gift he had asked for. Talk about living on a roller coaster – maybe this is why I no longer go on roller coasters at amusement parks- we are all living on a roller coaster!! Then there is the feeling you need to apologize- and all the guilt you feel about the gift giver’s feelings (oh how I know guilt), and guilt that I couldn’t keep him from getting so upset – because god knows there are plenty of people who will tell you all their ideas of how they get their kids to calm down or how to redirect them to something else. Which makes me feel guilty – why can’t I do that like them?? Little voice in my head of reason steps in to pull me back to reality “Because he’s not a typical developing kid – remember ???!!!!! And you are doing the best you can!!!”. And many times these are people who actually know your child’s diagnoses but still seem to look at it as more of a parenting flaw. The best is when we have been told he just needs a good old fashioned spanking! Eventually I started laughing at people when they would suggest that. So ‘guilt’ ….I know it well. I have learned to let go of a lot of it over the years, becoming more confident as his parent and I guess as a person myself. So I’m sure most of this has been rambling and I’m not even sure anymore what my original reason was for wanting to write you (ADHD is so much fun let me tell you!!). I guess to wrap up-yes I’m finally wrapping up believe it or not- I want to say again that every time you post something I am moved and I always learn something about myself, my son, or about life. I may not know exactly what it’s like to walk in your shoes but, as I’m sure you can understand, I deal with concerns and issues that have very similar roots. And I agree wholeheartedly that having my son has taught me to love like I never knew possible. He has helped me become a more empathic person which has helped me in strengthening my relationships with friends and even my husband. Prior to having Reilly in our lives I was a typical ADHD self serving/self centered person. I was so quick to pass judgement on people. I was all about me and living in “my” moments only. I see in my interactions with co-workers, friends, parents and teachers at my sons school- I don’t let people get away with judging others anymore. I force people to look deeper and to question things. I volunteered in my 6 yr old daughters first grade classroom last year to help with reading groups once a week. One boy in my group frequently asked to be excused to use the bathroom. Upon telling the teacher about this (and I really liked this teacher) she said “yeah it’s all just behavioral”. I of course had to say something. I said yeah but If it’s “behavioral” there still must be a reason. You don’t repeat a behavior like that unless you are getting something out of it – whether to avoid something he didnt like to do or by doing something instead he liked such as . I knew for a fact he had an IEP which included goals about reading. So maybe he would skip out
    out of fear of being called on to read or answer
    a question? Maybe he needed alone or quiet time, maybe he’s over stimulated etc etc etc.

    As long as you keep posting I will keep reading and learning and my layer of “thick skin” I have developed over the past 11 years will continue to grow. “I’m rubber… your glue…whatever
    you say bounces off me and sticks to you”….. An oldie but a goodie !
    disclaimer -:) **this has all been typed on my iPhone which apparently doesn’t allow you to go back and see what you have typed so hopefully most of it makes sense**

  15. Stimey

    Clearly what you say here is absolute truth for a lot of people out there. I’m glad that you could give them a mirror to see themselves and know that they’re not alone. I agree with a lot of this here too. The look of tragedy, the thick skin, the isolation—absolutely. I do believe, however, that it gets better. Obviously I can only speak about my experiences with my own child, but it does get better and less totally immersive.

    That said, I disagree strongly with your assertion that the diagnosis is like a death. Obviously others feel as you do, but I never had this reaction. I cried a lot in those early days, mostly when I didn’t know how to help my son or when he or I had a really bad day, but I never mourned the child I had imagined him to be. He is who he is and he always has been. I am starting to suspect, however, that my path through diagnosis was not typical. Yet, still, I can’t imagine that parents who have lost children could consider these two things comparable. To me, the level of grief is so far apart. Neither is invalid and I don’t believe in ranking grief, but I think they are two entirely different things.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      I appreciate that, and you have a point. I certainly didn’t intend to imply my grief was the same as a parent whose child has died. I actually have a very dear friend whose child died, and I would hate it if she felt I marginalized that experience with my statements. The death of a dream and the death of an actual person are absolutely two different things. But I still liken it to a kind of death in the sense that the stages of grief for it are similar – shock, denial, etc. In the same sense as divorce, broken friendships, etc. being kinds of deaths as well. They have an enormous impact on one’s future, nothing is ever the same again, and stress and grief at the time are profound. Perhaps I should have clarified that in my piece by saying it is “a kind of death” rather than “like a death”. In fact, I believe I’ll go change that now. Thanks for reading and sharing your thoughts.

      1. CC

        I completely understand your “like a death” comment. As soon as I read it, it echoed exactly how I felt at the time of diagnosis for my child. I couldn’t talk to anyone about this feeling for two reasons:
        I had a good friend who’s child had died (and it was not the same thing).
        I felt that people would think I was over dramatizing the situation.
        What it meant to me was that every natural expectation I had for my son and his future was gone. I had to write a new story in my head for my dreams of his future – except I had no plot guide and I was terrified of what laid ahead.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      Lisa, I think it’s how I go about not crying. It might surprise some who read my emotional posts to know that I am a VERY reserved person. This is where it comes out. I’m so thankful you guys read it! :)

  16. musingsofanaspie

    Actually I do think your child is lucky to have you. I grew up undiagnosed and that’s going to color what I say here but it was good to read an honest summary of what it’s like to parent an autistic child.

    That said, I think parents have to be really careful to guard against ever letting their child catch on to the feelings you describe in #1. As a parent, I understand the “hopes and dreams” but as a kid I was constantly reminded that I wasn’t the child my parents had hoped for. They never said it outright but there were clues everywhere and that had a profound impact on my self-esteem as a kid. It’s been heartening for me to find so many parents who are putting acceptance of their child above all else. Which is why I started this comment the way I did. Your child is most definitely lucky to have you.

  17. Jane

    Well written and honest! And I think the death comment is damn right! We do mourn Those albeit superficial dreams… And we r not marginalizing anyone else’s pain but when what we imagined motherhood is completely different – it hurts! Call it childish but it’s true.. ! Like the holland schmolland poem, we do get to appreciate how truly wonderful our kids are and how much we love them but a part of you does always mourn.. And it’s ok! It’s like remembering someone you loved who isn’t with you anymore.. You can mourn doesn’t mean you don’t love them!
    So again.. I loved it and sent this article to my son’s therapists too :)

  18. Sue

    I’m coming from a different prospective so I never felt death, but I did feel fear when I realized how other treated her and us especially after the bullying happened. Now I realize that I instilled values and self-worth when she was small. This has helped her as she works to overcome the challenges imposed by others related more to the bullying and her long-term memory of events. Still I can relate to much of what you said as others definitely misunderstand and fail to see the love and joy she brings.

  19. Seneca

    Beautifully written and full of truth…I find myself relating with many of the things you mentioned, especially about birthday parties. :-)
    Wanted to offer another perspective on the age-old “he’s so lucky to have you” line. I’ve heard this…a lot. I mean, A LOT a lot. Right up there with the “I don’t know how you do it” line, right? I agree with you that it is WE that are lucky to have them. All of them, regardless of their neurodevelopmental status. :-)
    I was blessed to have another mother once say to me, “I am so glad YOU are your son’s mama”. Luck and pity had nothing to do with it…she was expressing appreciation and gratitude. She was happy that I was there to be the best mama for my guy. I think the well-intentioned people mean that our kids need us to do exactly what we do…love deeply, embrace “different”, be creative, be accepting and be their voice. And they are grateful that we are being devoted parents to our children. <3

  20. gooddaypickle

    THank you, thank you, thank you for putting into words what I have such a hard time expressing. I am going to ask every person I know to read this. Thank you again!

  21. Pingback: Holding Her in the Light | My Balogna Has A First Name

  22. PeaceOverPower

    Very well put; it describes my experience as it was for many years. I have to say, however, that my perspective has changed in some fundamental ways. In 1993, Jim Sinclair, an Autistic adult who is now an author and educator, wrote an article called “Don’t Mourn For Us” in which he describes some of his experiences growing up. I am not a religious man but, for me, reading Sinclair was a revelation that exorcized me of many of my inner demons and lead me to new ways of relating with my son. I am hesitant to quote him because I know that to some it will seem as criticism and that is the last thing I want. However, it was so healing for me, that I also have a hard time not passing it along. So, with utmost respect, here is a small, edited portion of his article.

    “This grief is very real, and it needs to be expected and worked through so people can get on with their lives– but it has nothing to do with autism.
    You didn’t lose a child to autism. You lost a child because the child you waited for never came into existence. That isn’t the fault of the autistic child who does exist, and it shouldn’t be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don’t mourn for us. We are alive. We are real. And we’re here waiting for you.”

    Peace.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      There’s no reason for you to be hesitant. I have actually quoted Jim Sinclair before. The autism experience is not black and white in any way. In his shoes, I might feel the same way. He’s right. Those dream children never existed in reality, and they are not a loss for the children who really are. Having said that…Those dreams existed for many of us for some time. And it would be a lie to say to say that many of us did not mourn them — not because our children have disappointed us. But simply because we wanted them to experience all that life has to offer. If my son were to grow up to be as self-sufficient as Jim Sinclair, I wouldn’t mourn one bit. But many of our children will not, are plagued by sensory difficulties and an inability to communicate, and will always be dependent upon others for basic needs. I do think it is okay to mourn for them. I do not think it is okay to mourn in front of them, however. I take joy in my son every day and love him just as he is. But it would be a dishonesty to say that I don’t wish he will learn to speak, become toilet trained, learn to read, have friendships, etc. I do want him to have those things. But, if his wiring doesn’t permit it, he is still loved unconditionally for who he is — Callum. My precious boy, who lights up my life.

      I think there is truth in both perspectives. Thanks for sharing. :)

      1. PeaceOverPower

        I appreciate you seeing my post a just a different perspective and not an attempt to negate anyone’s experience. The only reason I press the issue is because, as I mentioned earlier, Jim’s words were a revelation to me and, frankly, I believe they can be for other parent’s too. He helped me realize that my pain, fear and anger had become my inner staus quo. I had accepted that state of being as the only reality possible and did not leave room for much else. I agree that no one can stop a parent from having hopes and dreams when it comes to their children and, clearly, mourning is a personal process. The way and length in which we do it is different for each one of us and rightfully so. The point, I believe, Sinclair makes is that, this is an issue of agency or locus of control. Autism is greater than any of us and the powerlessness we feel is well justified. If we define the issue as being Autism, then we are in for and endless process of mourning as Autism is likely to be in our lives for good..The alternative he is offering is to see it as an issue of preconceived expectations which is something that we do have control over. We all have expectations and we all, at some point in our lives, have to manage them as the universe charts a path different from the one we imagined.
        Daily I advocate for my son; give him his medications, drive him to therapy and help him negotiate every social situation imaginable as he too is non verbal. Do I mourn my child’s Autism today? Of course… sometimes… rarely. When it happens, it is a very small, fleeting part of my day and for that I am profoundly grateful to Jim Sinclair. Peace.

        1. Profile photo of FlappinessIsFlappinessIs Post author

          I agree with you about it being much about preconceived notions. I am learning a lot these days about perspective and its resulting mindset. The Facebook-forwarding simplicity of “keep your eyes on the road ahead” isn’t helpful. On every journey you must look ahead. But the journey isn’t worth much if you don’t enjoy the people next to you. The car could break down. Detours happen. The map can be faulty. But these little traveling companions remain who they are. And it is very important to cherish them as they are. The children we always had, but perhaps had not envisioned. Peace to you as well. :)

      2. Lynne Pardi

        I totally agree with your response to the gentleman who quoted Jim Sinclair. I absolutely DO love my autistic son exactly as he is, and he has brought me great joy. I have grieved for the many wonderful life experiences that Jay will miss, though. He will never marry, become a father, enjoy the challenges of a career, make major decisions for himself, play a sport, drive a car, or read a book. He most likely will never speak conversationally. There is so much he has missed and will miss. Autism has cheated my son out of so many things! I grieve on his behalf. He doesn’t even know what he is missing (at least, we don’t think he knows). Do I grieve for myself? Yes, a little. I would love to hear my son speak! I would give an arm to hear, “I love you, Mom.” There is so much I don’t know about Jay’s thoughts, likes, dislikes, fears, hopes, and perceptions. I hunger to know these things! It’s OK, though. I didn’t get a “normal” child; but, I did get a very special and precious one. I know that I am lucky. Only a priceless gift from God could fill me with so much love.

  23. Pingback: Is This My Life?? | Planes, Trains, & Autism

  24. Nancy Bea Miller

    Clear and well-expressed. Beautifully written, in fact. I know you need a happy ending on these things, but I was a little worried that the tie-up was going to be to Disney-fied, but you pretty elegantly avoided stepping too deeply into that.
    I wonder how old your child is…mine is 18, and there is just a slightly different feel to this stage. Even more anxiety about the future…more physical exhaustion and less creative energy but at the same time, more experience with navigating the system. Lots of self acceptance and much less interest in the public’s opinion! The stares barely register any more. 😉

    1. Profile photo of FlappinessIsFlappinessIs Post author

      Thank you, Nancy. My son is 3 1/2. So, I am just beginning my journey and still caught up in adjusting. We have autism in our family, however, so I have witnessed the concerns of the later stages as well. Just enough to know the worry won’t be going away. I look forward to becoming less aware of others, however. That would be nice. And, at this point, the future is still something to look forward to as well. My son is so little that his path is not yet clear. I try each day to take a relative’s advice to be sure to enjoy the little years rather than spend all my time worrying as she did. She said that was her biggest regret. So, I try to get those feelings out here and spend the rest of my time cuddling, tickling, and giggling with him. Which isn’t so hard. He’s quite a little love, my boy. :)

      1. nancybea

        Yes, enjoy! Despite the ever present anxiety and heartbreak, these early years are the sweetest. And I am sending you good wishes, you never know at 3 1/2, how deeply he will be impacted. You may “overcome” in a very real way! My son, even with every intervention, therapy, medication, supplement and diet known to man, has ended up on the far end of the spectrum, what used to be called “low-functioning autism” or even more archaically, Kanner’s Syndrome.
        This end of the spectrum is so very very different from the other that it truly pains me that they are both called autism, to be honest. I see people blogging about their autistic kids who are in the gifted programs at their normal schools and making videos about Einstein and learning to surf and starting websites to connect with other kids like them (all good) and I think “WTF?” It’s such a different world…I think we need different labels.

  25. Faith

    This is beautiful and true. Have you considered submitting it to “Chicken Soup for the Soul of Parents with Autism and Asperger’s”? They are accepting submissions this month. The site is at http://chickensoup.com

  26. Margaret

    As a highly emotional and empathetic person (I get tears in my eyes watching other people’s children sing a solo or act out a part), when you see “that look” in my eyes, do not assume I am pitying you or your child. I am mirroring your hurt and pain. If you are mourning, I will mourn with you. If you are joyous, I will celebrate with you. If you are overtired, overspent, and internally crying for something you had dreamed about that will never be, the look on my face will literally be: “I wish I could take your pain away, and I can’t. In this moment, I feel it with you.”
    So Peace be with you and everyone … for in one way or another, we’re all dealing with something, and not one of us would trade our plight for the unknown, uncharted territory of our friends!

    1. mostlytruestuff

      Yeah, um…I’d TOTALLY trade “my plight” for ANY SINGLE ONE of my friends. In a heartbeat. Instead of giving sympathetic looks to a friend that is “overtired, overspent and internally crying…” why not just babysit her kids?

      1. Margaret

        Who said I wouldn’t babysit her kids/haven’t babysat her kids? Wow. I’m just trying to explain “the looks” some people, including myself, give. “Mostlytrue” —everybody has “stuff” they deal with. I think you misunderstood me.

  27. Ingrid Todt

    Well…this is the first time I have read your blog. I also have a 3 1/2 year old child on the spectrum. I also feel as if I had to go through the motions, including the mourning of the “perfect child” that my husband and I envisioned. It’s a feeling like no other. And one else around you truly understands. They show pity, and share the same lines as mentioned above (what a great parent you are, etc.) And I did my share of “hiding” from Birthday parties, restaurants, etc. And then one day I decided I did not care anymore. I needed to face reality and share my incredibly beautiful child with the world. I work full time and that has been a difficult decision, but I am truly blessd to be surrounded with supportive family and friends that help me when needed.

    Your blog hit the nail on the head. And it feels so good to know that I am not alone out there. I know that every child is so very different. I know that my friends and family, no matter how understanding they may be, think I am a weirdo when I share the stories about how my Ella FINALLY figured out how to drink from a straw, when she FINALLY gave up on grinding her teeth, and I am really getting ready for the day that she actually figures out what the potty is for. All of these little milestones that happen so easily and quickly for other children are certainly treasured by infinite numbers by those parents with kids with special needs. It’s like a celebration every time something happens. And that truly makes it so very special.

    Anyways…BRAVO to your blog here. I have so many emotions and feelings to share and I feel that this is truly a safe place to reach out to. It always helps to share. Thank you, for making a different : )

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  29. Cindy Sinclair

    Thank you whomever wrote this. You have been able to put my hearts pain and joys into words when I cant seem to the same. Bless you and know that there are many of us that feel exactly the same way xx

  30. Mark

    I have two severly Autistic children 6 and 3 yrs old and one typical 2 year old. Dreams may have been shattered in one way but new ones take their place, priorities change. I have always and will always believe that “quality of life” is a good goal to have. That is what I am striving for my diabled children and for my typical child, with whatever means that are at my disposal all their needs will be met, changed and fought for.
    Regards
    Mark

  31. Aspie Kid (@AspieKid)

    I’m not a parent so I try not to give people parenting advice, but it is interesting to read this from the perspective of an autistic. My mother always wanted me to have the childhood she had. She wanted me to experience all the things that she thought would make a perfect childhood. But she never asked me what I wanted. If I didn’t like the activities she had planned for me, she thought I was just being disagreeable. Birthday parties might be one of the great things in most people’s childhood, but autism changes everything. For some autistic kids, the best kind of party in the world is to sit alone in a silent room and think. I know that sounds really sad, but it is only sad from the NT perspective.

    My mom also worried about my difficulty in making friends and she used to encourage me to go talk to kids and introduce myself. She thought I was just really shy and she could cure me of it by proving to me that I could talk to other kids and they won’t bite. She thought that any kid could make a great friend for me as long as I would just come out of my shell and make an effort. But I knew that only a tiny percentage of kids would make compatible friends for me and I had no way to explain that to her because neither of us even knew I was autistic at the time. It was a constant struggle for me just to be left alone and choose the friends that I could relate to in my own way, and there weren’t very many of those kids to be found. The last thing I would ever have wanted would have been to collect a bunch of random people to call my friends.

    And most importantly, and I really do feel for parents on this point, is what kind of future will an autistic kid have? Society really is not fair in that way. Imagine being the parent of a black child and knowing that certain opportunities will not be available to your kid because of the color of their skin. But autistic kids have amazing abilities and potential and they can be really productive members of society as long as the society will recognize that and give them a chance. Job interviews are really hard for autistics because you have to prove you have great social skills in order to get jobs that don’t even require great social skills. People who dress nicely and make good eye contact get most of the jobs, regardless of their ability to perform the jobs they were hired for. This is a form of social discrimination and autism shouldn’t be blamed for that any more than being black.

    I have done okay in my life. I’m a software engineer and I’ve been developing software for 20 years. But it is important to note that most of that time I remained unemployed and unpaid and worked on my own software projects because the reward in it for me is the development process and knowing where my projects are headed and planning it out so it is good quality software. The income is not the main reason I do it. None of the software I’ve developed for companies even exists anymore because every single company I ever worked for is now bankrupt. They start up and shut down based on what the board of directors wants. I just don’t fit well in that kind of environment and I don’t deal well with the roller coaster ride of business decisions and exit strategies and rounds of layoffs and project cancellations and focusing more on stock prices than product quality, so I only take jobs when I desperately need money. Currently, I have not been employed for about a year and I’m getting ready to look for another short term job so I can go back into the mine and replenish my funds so I can get back to my own projects, the things that really interest me. My dad thinks I’m crazy. I could be so much richer than I am, but I would have had to give up so much of my own time and happiness in order to be more wealthy that the wealth would not have made up for it.

    I do think there is a place in this world for every autistic person, verbal or not, but it is not likely to be the conventional lifestyle. The path an autistic person takes in life will stray far from the beaten path.

    1. Lynne Pardi

      Thanks so much for writing!! I am the mother of a non-verbal autistic 26-yr.-old man. Jason hasn’t acquired many skills that society values or would pay him for; but, I know he has many survival skills and is a strong and intelligent man in his own right. His life hasn’t been easy. He was “written off” as mentally retarded years ago. He currently lives in a community-based group home and attends a day-hab program during the week. He has “odd” habits– likes to sit alone in his room, door closed, lights off, shades drawn, for periods of time. He has loads of sensory issues and almost no social skills. Those of us who know him best, though, see him for the skilled problem-solver and courageous survivor that he is. He has to live in an environment that was not designed with his needs and his sensory realities in mind! He has done a great job of adjusting to it all and making the best of it! It’s so helpful for me to hear from someone like yourself, who really, truly understands my son even better than I ever could! I wish you the very best! Follow your own heart and keep persuing your own interests and applying your talents. They are valuable– YOU are valuable! And, please, keep enlightening the rest of us about autism and what it means for a person who is autistic. We are still so ignorant about this reality that affects so many! People like you can teach us a lot about acceptance and about how to help autistics to utilize their talents for their own benefit and for society’s benefit. You write so well and so clearly! You have the power to educate a lot of people who are still pretty clueless about autism. Maybe that is not your personal ambition, but I hope you will think about it.

      1. Aspie Kid (@AspieKid)

        Well, I obviously don’t know your son, but I can make a few educated guesses about him. If he has sensory issues, like many of us do, that is probably a big part of the reason why he likes to sit alone in his room in the dark. That really is not that “odd” of a habit for autistics. I love to be in an absolutely silent place where not even a faint sound can be heard, whenever I have an opportunity to be in such a place. And my brother keeps his house so dark sometimes it is like being in a cave. Also, I bet son’s social skills are just fine, but it’s just that he doesn’t use them and doesn’t practice. Learning to be social is difficult and a slow process that does not come naturally. It took me years to figure it all out and I’ll admit that most of the social skills I have today, which people usually really love, are just little things I picked up from people who made an impression on me throughout my life. I have been emulating people’s social skills since I was really young and over the years I’ve built up a collection of social skills that I can use in most situations in life. But it never came naturally for me and it still doesn’t. In some cases, I can even remember the exact person who I “borrowed” some particular social skill from. But if your son were in a comfortable non-threatening sensory-friendly environment where he could meet some people and be introduced to social situations slowly at his own pace and only for durations of time that are comfortable for him, or a work environment or something like that, I bet he would pick it all up over time. I’m sure he isn’t totally non-social and he would probably love to find the right kind of friends who are compatible with him if he could. I’m guessing that sensory issues cause him to want to sit in his room, and sitting in his room so much and avoiding sensory issues is not the way to develop social skills. If you sat in a room all the time because of sensory issues, your social skills probably wouldn’t be very good either. But it’s not because you can’t socialize, it would just be because you don’t get any practice at it. You could try to introduce it to him slowly and let him know that it is all up to him and give him complete control over it so as not to create any anxiety. If he knows he has a safe place to retreat to whenever he wants to, he might like to try to meet some new people. Hard to say. The most difficult thing for me is finding friends who I feel compatible with. I live a mostly solitary life myself. Sometimes I go days without any social interaction at all (other than the Internet). But I have a handful of great friends I’ve found during my life, about half of whom are almost certainly on the autism spectrum too, and they are very close friendships.

        1. Lynne Pardi

          Thanks so much for your reply, Aspie kid. What you said about Jason’s underdeveloped social skills makes a lot of sense. May I ask you a couple of questions? You may have some insight into these issues that will take me more time than I probably have left to develop LOL!

          When we visit our son at his group home, he allows us only very brief visits. We bring him a snack and go down to his room with him while he eats it. I sit on his bed and I might ask him how work has been, and ask if he likes his snack. He sometimes doesn’t answer. Other times, he’ll say, “Good” or “OK.” When he finishes his snack, he hands me my bag and says, “Go!” (Sometimes I get “Please go.”) We have learned to honor Jay’s wishes and leave when he asks. I used to try to linger, wanting more time with him. That led to obvious discomfort and even aggressive behavior on his part. Do you think that his sensory issues are the reason he is not able to tolerate visitors longer than a few minutes? Is it just discomfort with social interactions? Maybe both?

          Another puzzle for me is his lack of speech (He says only a few single words & approximations– prefers to point to what he wants). The strange thing is that every now & then, he will speak a word with crystal clarity! It might just come “out of the blue”

          , or might be relevant to a situation he is in. When he was 4 or 5, he had an EEG done in the hospital. He was very agitated & scared. At one point during the procedure, Jason clearly SAID, “I hate this! I want go home!” I nearly fainted!! I had never heard this child speak a sentence!! So, it would appear that Jason CAN talk, but chooses not to do so. Why?? Does he need to reach a highly emotional state to be able to talk? I’m confused. Do you have any ideas on this? Please share them with me!

          Thank you!!

      2. AspieKid

        Those are some really tough questions, but I will do my best.

        (BTW: I hope this reply shows up in the right place, because your comment didn’t have a Reply button on it.)

        One thing I noticed is that you said you ask him how work was. Does he like what he does? Does he like where he lives? When you visit him, is it on a day he works? I was just wondering if the times when you are there might be times when he needs to shut down or be alone or decompress in some way. Also, if he is not happy in his life for some reason then he might be in an almost constant state of needing to decompress. I don’t know, I’m only speculating.

        Does he have any interests or friends where he lives? Does he enjoy any activities that you might be able to do with him that would make him want to visit a little longer? Do you think he feels like you enjoy the time you spend with him when you visit? I’m just brainstorming ideas now and kind of thinking out loud. Without knowing him I can only really guess, but one thing I thought of is that you could bring an activity rather than a snack and he might enjoy the time spent more. But like I said, I don’t know him.

        Does he ever communicate in writing or some other way that might be more comfortable for him? Everything about autism is neurological, and speaking and listening also involve neurological pathways. If those pathways are limited in their functionality, it could be difficult for him to interact in certain ways but maybe not others. It is obvious that he can speak, but it is not one of his favorite things to do. The interactive process requires a person to listen, translate what they hear from speech into whatever concepts they understand, formulate a response, process the response back into speech and then tell the vocal cords to utter it. Each of those steps requires neurological activity and if the neurological pathways that handle those things are limited then the whole process becomes difficult, and for some autistics it is completely impossible.

        But I doubt he would need to reach a highly emotional state in order to speak. Highly emotional states usually cause autistics to become less verbal, not more. But there could be exceptions to that too.

        I just don’t know him and I don’t want to suggest anything that would be misleading or incorrect. But one thing I usually suggest when people ask questions about specific autistic individuals is to ask the person directly. He probably knows the answers to most of those questions.

        I hope that helps. Since I don’t know him, I can really only guess about these things.

        1. Lynne Pardi

          Hi AspieKid! You raise some great questions about my Jason, some of which I have already pondered and others I never thought of before. We do usually visit Jason shortly after he gets home from “work” (a day-hab program). He probably does need to rest & “re-group” at that time. Maybe weekend visits would work better for him. I will ask him! If he can’t reply, I might try Sunday visits anyway.

          I wish I knew if Jason was happy where he is. He can’t tell me. He often seems to be in a good mood, so I’m encouraged by that. He really doesn’t have friends. He tends to interact more with staff than fellow residents (same thing at day program). He clearly prefers some people over others, but prefers solitude over company in general. He doesn’t seem to have any particular activity that he enjoys — well, not anything that we could do with him. He likes reggae and calypso music and sort of rocks his body to the beat.

          I hope he is happy. I pray every day that he doesn’t resent me for placing him in the group home. I wonder all the time just how much he understands and what he thinks and feels. His life hasn’t been easy. I so wish we could communicate better with him. He doesn’t write, type, use a computer, etc. He does some signing and points to pictures. He seems to understand just about everything he hears. One of the other residents in his home passed away last year. The home director told Jason,” I have sad news. Steven died. Do you know what “died” means?” Jason replied, “Yes. Gone.” The director of his residence thinks Jason is “highly intelligent.”

          I plan to take your advice and ask Jason some questions, just to see if he at least tries to answer. Maybe I should tell him that I know he understands me and that he is smart. I could also tell him that it’s OK if it is just too hard for him to talk to me. I understand. Your explanation of the neurological processes of speech really helped me to grasp just how difficult it probably is for him to talk. Nobody ever explained it to me that way, in those terms, until you did. Thank you so much for your help!

      3. Aspie Kid (@AspieKid)

        Lynne, I don’t know if you are still following this thread of conversation, but I still think about your son often and wonder how he is doing. The thing that sticks out in my memory about our conversation about him is that the director of the home where he lives said he is “highly intelligent”. I also remember that you said he likes reggae music, because I also like reggae. If you still follow this conversation, feel free to contact me at aspiekid65@gmail.com. I would be interested in hearing how things are going for him.

  32. Byron

    Nailed it! I have used the phrase “Limitless Love” and I think it may be the best way to describe it. I am the grandfather of twin boys with ASD. Thank you for this moving analogy. Accurate, truthful, heartfelt, honest.

  33. Aimee Darby

    This is so perfect! Every part of it! Thank you for putting into words the feelings we all have parenting our amazing special children. It makes it not as lonely knowing others feel the same!

  34. Bob LaTour

    May I have permission to use this article in our church news letter? I have three special needs grandsons. If permission is granted, I will certainly give credit to you. Excellent insights!

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