Processing Grief Over a Loved One’s Autism Diagnosis

I have just finished having my yearly tradition of what I like to call, “a good cry.” It’s my son’s fourteenth birthday, and for the past ten years, I have set aside the morning hours of this day to participate in this cleansing ritual.

My son, Ben, isn’t deceased; he has autism. Not the “you-wouldn’t-know-it-if-I-didn’t-tell-you” kind. Ben has “full-blown-could-melt-down-any-moment-take-off-all-his-clothes-and-run-into-the-woods-requiring-search-helicopters-and-bloodhounds-to-find-him” kind. You get the picture.

As a therapist, I work closely with the Kubler-Ross stages of grief:

  • denial
  • bargaining
  • sadness
  • anger
  • acceptance

With acceptance usually comes closure; that feeling of relief that the person isn’t suffering any longer, a feeling that you can now let go of the worry that accompanies the loss and go on with living your life.

Ben developed typically until age two, then lost skills until his autism diagnosis at age four. Sometimes I wonder if a traditional loss would’ve been easier. There would be closure. With autism, there is acceptance, but no closure. My grief is what experts call “cyclical.” With autism, as well as many other chronic illnesses and disabilities, the caregiver’s grief over an absence of perceived “normalcy” often recirculates through these five stages.

The combined training I have received as a mental health counselor and autism mom has taught me the following about handling grief in the “Land of Autism.” I’ve organized them according to the words from the wise women who have accompanied me on this journey.

“If you don’t deal with it, it will deal with you.”

This statement is about more than denial. In my counseling practice, I primarily treat parents raising children with autism. While every parent goes through the denial stage, whether it is for ten minutes or several years, “dealing” with our grief requires more than just accepting the diagnosis. We need counselors, friends, and professionals to help us with parenting skills, marital strife, and self-care. After the diagnosis, I took off like a racehorse out of the gate, doing all that could be done to help my child. Two years into it, my son was thriving in a wonderful program, but I was in a fetal position on the couch with severe depression and panic attacks. Take self-care seriously.

“What you can anticipate, you can plan for.”

Being aware of the five stages of grief is helpful because we can tell ourselves it will pass when we are experiencing it. We also need to be aware of “anniversary grief.” This is where an event can trigger a grief response that can correlate to a specific date or time of year. For some parents it’s their child’s diagnosis date. For me, it’s my child’s birthday. I now anticipate this event and make sure I set aside time to process my sadness.

“It is what it is.”

I don’t want to cry on what is supposed to be a happy occasion. The first few years I told myself I was being ridiculous and needed to get over it. This did not help the situation and I found myself suppressing sadness that would end up bubbling over into other areas of my life without warning. Acceptance is not only about our kids, it’s about accepting ourselves and our feelings. Set aside the time you need to grieve.

“Never, never, never give up.”

Autism itself can be a tremendous stressor on families, and it tends to be a leavening agent that brings all the problems that already existed in our relationships “to the top,” so to speak. I have personally had to save my marriage, face my demons, examine my beliefs, eliminate bad habits, make new friends, and change careers. Later today, I will process my mixed feelings about the birthday, in private, with my husband, and we will be closer because of it. And I will wake up tomorrow with a renewed resolve to never give up.

© Copyright 2011 by By Janeen Herskovitz, MA, LMHC. All Rights Reserved. Permission to publish granted to GoodTherapy.org.

The preceding article was solely written by the author named above. Any views and opinions expressed are not necessarily shared by GoodTherapy.org. Questions or concerns about the preceding article can be directed to the author or posted as a comment below.

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  • Pam

    October 11th, 2011 at 4:02 PM

    Autism wears so many different roles in different families.
    I too have grieved for the life that my own autistic som will never have. It has made me so sad that there are days when I too have had to dedicate to having a good cry.
    But you know what? I love my son, and he is so special to me, that it is hard to think of having a different life.
    I will love and cherish him through anything for the rest of his life and beyond, and have come to realise just how much meaning he gives to me daily.

  • carrie

    October 12th, 2011 at 10:22 AM

    having a family member with autism can be tough.and it is the especially so for a mother because she is emotionally the closest to a child.often people just deny that their child has a problem or become hyper reactive-in the sense that they will ‘care’ for their child beyond all limits and burn themselves out in the process.so having a plan like this with knowledge of things will be mightily helpful for someone who could be going through a situation like this.

  • k.q.

    October 12th, 2011 at 8:00 PM

    Janeen, thank you for your honesty. It’s so refreshing to hear a mom with a child with autism admit they are sad about it and what will never be. I look at my son’s old schoolfriends and see them grow, have families of their own and mature. He’s 22, has AS and is like a child of 12 in so many ways.

    People around me would be horrified that I was never one to voice the “oh but I wouldn’t have him any other way” line you hear from some parents with autistic children, – because I would! If I’d been given the choice, I would have wanted a healthy normal son. No parent wants to see their child struggle in life.

    And it makes some parents so angry that I say that yes I do wish it had been different, as if I’m breaking some unwritten etiquette rule in the autistic community. I feel I’m just more honest than most. I love my son, don’t get me wrong. I just wish his life would have been different and I could have watched it unfold more happily for him.

  • AS

    August 7th, 2017 at 8:58 PM

    Thank you, if I could help him my Autistic son not struggle in life, I would change him too. Unfortunately, we can’t, but know that I too, like you, accept my son the way he is, but if I could change it for him to be healthy and have a easier life, I would in a heartbeat.

  • janey t.

    October 12th, 2011 at 8:22 PM

    Janeen, I loved your piece. Bless you for sharing it.

    You may be interested in a special needs theme park. One of my big regrets with my own child is that she never got to enjoy theme parks like an ordinary child did because of sensory overload issues and her difficulty with crowds.

    I read about it at the Caregivers section of Suite 101.com section in an article by Mary King. It’s called Morgan’s Wonderland and is for children with autism and other special needs.

    I’ll quote from that article:

    “Morgan’s Wonderland is an ultra-accessible theme park that’s all about inclusion. 25 acres of rides and attractions accommodate persons with special needs.
    Caregiver parents might say that Morgan’s Wonderland in San Antonio, Texas, is a wish come true. The rides and activities are designed to accommodate special-needs children and adults. Parents, caregivers and family members (including grandmas and grandpas) don’t have to worry about trekking long distances from one activity to the next because the popular park sits on just 25 acres. But don’t let the small size fool you; if you want to join the fun, you’re strongly advised to make reservations.

    As with some of man’s greatest innovative ideas, Morgan’s Wonderland (Official Website, Gordon Hartman Family Foundation, 2011) got its start from a vision. Founder Gordon Hartman wanted to build a place where his 17 year-old daughter with special needs could have fun enjoying indoor and outdoor activities alongside children non-disabled. Morgan’s Wonderland, a non-profit attraction, opened in 2010, and has so far attracted over 100,000 visitors. Not bad for a place that has so far gained most of its popularity through word of mouth.”

    I’m not sure if I can post the link so please Google it and pass it along. We tried a funfair once with our daughter and what a disaster that was. Days like that really make you feel the gulf between your child and non-autistic children even more. I wish I’d had a place like this to take her to!

  • abigail wilson

    October 12th, 2011 at 8:31 PM

    I’m shedding a tear with you, Janeen. Just because we understand our feelings logically sure doesn’t make them much easier. Your story’s so familiar to me. I too worked my butt off to do the very best for my son. It took me a while before I finally fell apart under the strain. You get so wrapped up in helping them you put yourself on the back burner for too long.

    I’d advise any parent with a new diagnosis to keep in mind they need to have R & R time too. You can’t help them if you’re sick.

  • teresa b.

    October 14th, 2011 at 8:57 PM

    I’m glad to hear some marriages survive autism. Mine didn’t. My husband couldn’t handle the dx and I couldn’t handle him not handling it and stepping up to the plate for the sake of our son. We grew apart as I became more and more involved in the autism groups and message boards online. That was my lifeline. His was alcohol. The more time I spent on autism, the less we spent together.

    It would be funny if it wasn’t so sad how he basically opted out instead of joining with me on that road to finding answers and help for our lad. It was unforgivable in my eyes.

  • Anonymous

    January 15th, 2020 at 8:17 AM

    Autism itself can be a tremendous stressor on families, and it tends to be a leavening agent that brings all the problems that already existed in our relationships “to the top,” so to speak.

  • Jenna B

    July 29th, 2021 at 3:17 PM

    I can’t imagine how hurtful this page, especially the comments section, could be to an autistic reader. Especially one who comes from a difficult family or struggles with depression.
    To any autistic person reading this: You are not a burden. You have worth just the way you are. Other people’s pessimism does not define your life. And you do not destroy other people’s relationships; they do that themselves. You don’t need to change who you are just to please other people. If people do not see your value, that doesn’t mean it doesn’t exist. I hope you find people who appreciate you for who you are, autism and all.

  • Richard

    August 2nd, 2021 at 12:58 AM

    I don’t know what to do or who to trust or confide in. I am special needs people who have been misdiognosed my whole life as ADHD an been made the excuse for everyone else but I always knew it was something else that was over looked and I have had a couple different doctor suggests that I am autistic and I feel like I agree but evey Dr visit is a different Dr an no one knows anything about my past or goals set an things I thought would be put in place an I had a support system but I never have I was always the reason for whatever conveniently was presented. My life has always been me trying to make everyone happy giving my all doing everything I can an even if it’s 100%right I’m still made to believe that I am wrong my mother is narrcassist an step father her enabler an my relationship with girls always was manipulated as the girl learned how to control me an play along with me MoMA an know two ex’s with kids married once an divorced once my ex is way more crule an manipulative master narrcassist heartless an aleionated the children and me an skipped town and this whole covid thing made keeping in touch with someone who is playing games and hiding than claiming I do call when I stay calling an being talks down to told they hate me whish is lies all they knew was me till I figured out who she really was and then she pulled this big scam on me an ran outta state mostly over me knowing what she was really doing an all the ocs and kidnapping charges from her other children fathers she overwhelmed an ran stealing everything I had an my other children belongings an gave my tools an etc to her boyfriends bunch of them as I find out she had 8 kids by 7 men an I’m only one with two from her as well I’m only one that her kids knew never knowing any of the other as we’re all hidden an blocked from knowing there location and contact.. it’s a sad stories what this woman is doing to these kids and the reports and documents for child abuse she has but she without my knowledge has ruined my credit put things in an out my name such as several cars an wreck them on insurance in my name I learned about then worked on her own driving store to store claiming to be a couple team under my name and her own an I wasn’t there I just find out as she ruined my disability and caused me not get stimulus help an I barely got food stamp an medicare idk what to do as of now but trying to get on good path with good people support guidence as I want to seek justice an joint custody as I know kids need both parents not just one .. I have three older kids that are all super smart an all around blessings grown co parenting from so I know I’m good to raise them one if I have to I e done it before with five to eight myself while maintaining the house clean cooking and building a house an homework and making money for crafts at home every day I was good at it when I had to do it for them no choice but to but now there all in teens and got friends and a social life I am at home with my gf whom takes care of me as I mentally fall apart emotionally aswell from sitting still so long an not communicating with others I feel retarded an like I lost alit of me upstairs all an some days it comes back an I’m genius with ideas inventions an things but then again I get overwhelmed with all the ex did to me committing so much fraud an crippling my ability to thrive through my credit an work damaged my name’s credibility an talks all this negative energies online socially an my family mom an kids call an say they heard I did so an so an I didn’t know about it I sit an pray that God gives here a heart cus the person she is don’t have one it’s sad but I still pray for her to find peace .. I need a friend to speak with someone who can help me with resources to evolve to a alpha male but equal to others I don’t want to be above anyone just who I am now with out the knifes an foot prints in my back this girl even once chained a thirty foot chain to my ankle an to the trailer home frame for weeks thinking I would leave long ago about four yrs ago an my foot still purple smh other people have seen it as I was chained I didn’t know better as I was greatful thinking she love me that much she ain’t want me to go anywhere cause alot of girls always like me I’m Mr nice guy an always helping people no matter who or what they needed if I had it to give I did with out expected retribution in return give an do from the heart an continue with faith as God will provide me ability to gather what we need an if not I didn’t need it but know I know I’m at the folk in Rd and I need a pray to be heard an I keep trying to get the help but never get calls back or email return an it’s anxiety causing frustrating that no one cares everything says equal opportunity and unbiased but my last job manager two months ago stole my paycheck an even put half my hrs as a waiter instead all my hrs as cook sneaking without me knowing on my checks missing alot of money now I can’t get her to return my calls an don’t know how to explain it to get my money back I need assistance bad someone somewhere has to be able to help me please I sincerely appreciate you losing to my rants while I vent it out alil but I’m starting to feel like I am getting sick I’m barely getting enough to eat even though I’m already picky an don’t mean to be I’m just set in what I eat n what I won’t I need help please point the way or not idk I’m just not gonna give up ever my kids any kids deserve to have there father fight and fight I will peacefully till my heart quits on its own idk what else to say even though I barely told any of the abuse I suffered because I have survived my abuser an I choose to rise above the negativity and hate and promote positively an courage as I know one day the kids may seen these notes as there always watching eventually an others aswell an we all influence each other and if I’m going to be in that position than it’s going to be to lead to righteous faith I need to rest but hope I made a new friend I can confide in I have no one to talk to an oblivious to where or who to contact for how to idk but how to say thank you for your time and understanding and hope to hear from you soon God bless humanity goodnight.
    Rich

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