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Oh, Good Grief!


By Cathy Jameson

I decided to watch a TV show last week instead of staying up late on the internet like I have been doing.  I’ve spent too many days focusing on What Isn’t and What Hasn’t when I would be better off concentrating on What Is and What I Can Do About It.  While attempting to change my ways I planned on reading non-autism related literature, cleaning my house with a little bit more effort and watching a TV show every now and then just for fun.  That all sounds easy to do – relax and enjoy the here and now.  But, after years of concentrating on Ronan’s needs and how it’s affected our family, it’s hard to walk away and just let go. 

Try as I might, baby stepping into a calmer state with more peace-filled thoughts is where I hope to be one day.  That’s hard to do when little things remind me of just who I’ve become as Ronan’s Mom.  Take that TV show for instance.  The night I decided to call it a day, to stop reading, to reduce the fretting and the overanalyzing, I turned on a show and hoped to quietly melt into the couch.  I did for a little while until the plot took a turn.  The topic:  death and dying.  Great.  I had hoped for something a little more upbeat and was now face-to-face with despair.  I decided to keep watching though and settled into what I thought was going to be an hour’s worth of mindless distraction. 

As the show continued, a character quoted Elizabeth Kübler-Ross and the Five Stages of Grief.  Hearing those stages hit me.  They hit me hard.  So much for relaxing, I thought.  Instead of paying attention to the rest of the show I was thinking about Ronan, wondering about his life and also brainstorming this post.  I contemplated Kübler-Ross’ model.  It suits more than just for those who have suffered a loss through death.  The five stages, although not always experienced by every individual, nor followed chronologically, made sense to me.  As the parent of a child with special needs, especially knowing that my child was typically developing for a period of time, it does fit the criteria of a terminal loss.   I should note it’s not so much the physical death of a child I was reflecting upon because thankfully my son lives and breathes.  But his abilities and his disabilities remind me daily of loss, loss of what he can do and what he can’t do.  Sadly, our community has witnessed deaths resulting from issues with autism.  But my original thoughts about Ronan’s great needs and of what could have been, and later what should have been had I known more – yes, those. They exist.  They are true.  They are real.  They are unfortunate.  And for many, these issues could have been prevented.  

Knowing some of the struggles, pain, unfortunate situations our children have to deal is part of daily life.  The worry, frustration and questioning we do now is because of what happened.  How we as parents handle those emotions certainly plays a role in how we protect our child and who we let in to help.  Here are the stages of grief I imagine other parents go through once their child has been diagnosed and now live with autism:

Denial – The parent thinks it’ll be fine.  It’s a temporary setback.   A glitch that’ll smooth over.  Their child is just a little delayed, but he’ll catch up.  I know this.  I know this because that’s what I heard when Ronan started his decline.   But, what I was seeing wasn’t a decline.  It was more than that.  His body was growing weaker, filled with toxins, struggling to handle the load.  Systems misfired.  Health took a turn for the worst.  But, he’s a boy.  Just wait it out, Mom.  That next milestone is just around the corner.  He’ll be fine.  See that, doctors play the denial card, too.

Anger – It’s not basic anger and then you get to blow it off.  It’s sheer frustration.  Frustration at the medical community.  Fury toward their child’s educational options (which for some shouldn’t be termed “education” because it’s anything but).  Feelings of devastation linger.  Then they are accompanied with four-letter words that are flung like poo at people and practices that should never be allowed near another child ever again.  Thoughts of Oh, no!  Now what?  What will I do? swirl through parents’ heads.  The worst thought that sends them reeling?  It’s the thought that comes with the discovery that some (or much) of what their child is suffering could have been prevented.  That hits them like a ton of bricks:  ARE YOU KIDDING ME?!   But with this reaction comes another.  Sure the parent feels the brunt end of the effects of autism - the financial aspect, the family upheaval, the physical struggle, the emotional breakdown.  But what the parent feels pales in comparison  to what their child is experiencing -  losing their speech and other bodily functions, having to sit through hours and hours of therapy and appointments, being told what to do when, where and why because the child no longer has the ability to make logical, safe or healthy decisions.  Yes, that anger stage is a doozey and carries a great weight.  It’s one that can last a long, long time because the damage done to the child can take years to reverse.

Bargaining – Please, oh please, oh please fix this.  Let me be the one who has the child with a miraculous recovery.  Let my child be the one who goes from severely disabled to top-of-the-class valedictorian.  I’ll do anything: HBOT, RDI, ABA, MMS, OT, PT, ST, IVIG, PECS.  You name the acronym, and I’m all over it.  I’ll do it.  I’ll do it well.  I’ll do it all, I promise.  Just please, please oh, please take this away.  Make it stop.  Make it better.  Or, give it to me – give me the apraxia, the diapers, the ugly stares from strangers.  I’ll take it all if it will make my child whole again, please.  Please.  Please!

Depression – Where to begin?  I think this is where the denial, anger and bargaining stages all come together and blow up simultaneously.  It happens during a child’s worst meltdown.  It starts the moment a very unsuccessful IEP meeting ends.  Depression lurks in dark corners waiting on its prey knowing that anything can go wrong.  When something does go wrong, depression swoops in and multiplies sadness, fear and defeat by at least ten thousand.  Depression nags us and rags on everyone else.  It seethes hoping to snag another into the depths of despair.  It brings us to the lowest low causing us to fall down in our tracks.  It gives us no desire to get up and go; and we’re okay with it.  Yep, depression is a dark and dismal place.  The worst part is that the depression stage has yo-yo factor:  depending on how your child is doing, you could return right back into depression.  One minute you’re up and the next you’re dangling by a thread.  How we scoot up that thread, if at all, will determine how long depression lasts.

Acceptance – This is the hardest one.  Well, for me at least.  Sure I can accept the fact that Ronan was normal.  Yes, I accept that he received some preventative vaccinations that were supposed to work to help his body didn’t.  Absolutely I can accept that I watched his development decline.  I can also accept that I was mislead by medical professionals I formerly trusted.  I do accept the fact that I was ill informed by people who confidently made a one-size-fits-all decision for my child (“Okay, so today Ronan is going to get the following vaccines….even with the ear infection we just diagnosed.  Yep, no worries, he’ll be fine…Mom, stand right here…hold him down…there, all done.  Don’t forget to give him that antibiotic.  Oh, and that Tylenol, too!”).  I accept the mistruths.  I accept the damage done by others not just to my son but to thousands of children.  I accept the rubbish spewing daily about vaccines and how safe and effective they are said to be.   I accept that too many people still don’t know enough about vaccines.  And, I accept that it’s my duty to educate them with Ronan’s story because at the rate our vaccine schedule doth grow, more children are at risk to falling onto the spectrum.

Yes, I do believe I’ve experienced some of those five stages.  I know I’ve worked through some of the grief only to be thrust back into it when Ronan has a setback.  Depending on the situation, and subsequently the outlook I have for whatever Ronan is dealing with, I can ping pong from one stage to the other.  I have learned how to deal with some of my emotions because after Ronan perseveres, so does my attitude.  But, until Ronan is more abled and knowing that he has to go through a lot more work to get to that point, I know I will still have the hardest time with acceptance. 

The acceptance stage is the one that makes me the most worried and the least confident.  Fear of Ronan’s future should he fall ill, or worse die from complications because of autism, rule the outcome of that stage.  That stage won’t be complete until I stop wishing I had known more, or stop wanting to turn back the clocks or stop being so determined to tell others that they could have a better chance than I.  I have accepted a lot of things in life, much too many to list, but I will never accept that what happened to my child and what started his potentially life-long, debilitating, devastating developmental issues are allowed to be acceptable for the greater good.  Never.

Cathy Jameson is a Contributing Editor for Age of Autism.



I guess I am weird, because it just never occurred to me to deny that something had gone horribly, terribly wrong after hmy son's MMR vaccination. I am NOT by any means criticizing anyone who has - who can blame them. I do remember thinking please, please let me be WRONG about this. Once I realized what had happened I went into full on white hot anger, and I have been in this stage for the past eight years. I do not think I will ever get past this. I cannot and I will not accept what was done to my son! I love him with all my heart and soul, but I HATE autism, and I HATE those responsible for doing this to him! I just cannot accept that he may not recover from this. I want to badly to help him recover, and I hate feeling so helpless. I also bitterly resent that fact that our children are suffering and so many are just ignoring it.



The reason why you do not perceive Acceptance, and keep looking for the missing piece, is because you are at the Resolve to Overcome point in the process of grief. That's where we all esteem to be. It's the ups and downs of the grief cycle that bring us back to fear, etc. that need to be understood. So Acceptance in Autism is not the complacent kind if you are a recovery-oriented parent. It's just the final step before we figure out that recovery is up to us, and we Resolve to Overcome autism's impact on our child and family.

So when I would reprocess through grief as my son went through the ups and downs toward recovery, I would hit acceptance as that point of regrouping. I would use the analogy of punting on the football field. Take a deep breath and head in a different direction of what needed to be tried next.

I hope that helps to clarify.

If you are wondering what the other components are to this cycle it is an overwhelming GUILT, as though our sense of guilt keeps us going through the day. Its our narcotic of choice as parents of ASD kids. I wrote about that too. Maybe I will send to Kim in article format.

Christine Thompson

It appears to me that certain stages of the grieving cycle affects the medical "experts" as well-

Denial: It's just better diagnosis or over diagnosis. The autism numbers aren't really going up.

Bargaining: If you don't waste my time with all of your layman theories/remedies, I promise to continue to help your child as little as humanly possible. Sound good?!

Anger: You people are making my life a living hell. I can't stand it when you bring your child into my practice. maybe I can "fire you" I've heard some of my pals are doing this. Sounds crazy but I'm just so angry!

Acceptance: We can now look forward to the normalization of over a million autistic children living happy active lives in our community. If we can accept it, why can't you nutty parents? Jeez, just thinking about you guys make me depressed...


Its really unfair isn't it? I would just give anything to have a conversation with my daughter. I just keep telling myself that I'm chalking up karma points, but it doesn't make it any easier day to day. My heart goes out to you all.


Donna L. - you hit it dead on. I believe this endless cycle contributes to parental PTSD - something that has yet to be truly recognized.

Two steps forward, one step back. That one step back puts me back emotionally to the beginning of this entire nightmare of illness every time. It's so important to have "objective" by-standers who can assure you of progress.


Thank you again, Cat, for this article. Our boy has had a very rough two weeks, with a few good days tossed in the mix, and his emotional roller coaster became my emotional roller coaster (i am still on the darn thing!) I fear what kind of night we'll have (sleep or no sleep) and what the day will bring tomorrow (clear eyes and contentment or agitation and pain?). I feel more like a CSI detective than a mom--trying to figure out what caused the good day, bad day, horrible night, etc. I had never thought about the stages of grief, but after reading what you wrote and the comments, it is very helpful. I live in a dinky town, and I was starting to feel crazy for being so incredibly angry all the time. What you said about how our kids feel hit home too. I can't imagine and sometimes I don't care to. Thank you for another great Sunday read.



Researchers STUMPED AGAIN with autoimmune response....
again do we see this problem in the AMISH communites ???

Concern as spike in type 1 diabetes is seen in US youth

..."The growth in type 1 stumps researchers who haven't been able to identify what triggers the autoimmune response (36+ vaccines) or explain why an increasing number of people are afflicted. About 80% of type 1 diabetics don't have a close relative with the disease."

Ivor Hughes

Thank you for sharing Cathy .. You and Ronan help a lot of others by laying your self bare .. courage in adversity is a powerful message.


Something to possibly study and eliminate from your child. I would guess this may be much more common the recognized.

Jamie's Story - Our Child's Recovery From PANDAS


PANDAS-the acronym for "Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep".

Donna L.

I was listening recently to a talk by one of my most favorite speakers on the planet, Jack Kornfield. He was talking about working with difficult emotions and he quoted that Chinese proverb: "You can only go halfway into the darkest forest; then you are coming out the other side." And I thought, in terms of autism, that is a complete load of crap.

Most of us autism parents seem to be in this strange psychological place of limbo, where we end up going through all the stages of grief - however many there might be - over and over again. We can cycle through all of them in less than an hour or we can get stuck in just one of them for years at a time. Rather than death, I think autism is actually much more similar to having a missing child. (although admittedly a million times less horrifying) So many of the emotions have to be the same: Where did he go? What is happening to him when I can't see him/be with him? Does he know I am trying my hardest to bring him back? Will I ever find him again? And the worst: how can I ever leave this world not knowing whether he will be safe and well cared for.

I don't know...it's pretty darn awful. And I can't for the life of me figure out how to get to that Acceptance stage.


Right now I know a two year old boy with impacted bowels and no speech. He is surrounded by the priviledge of extended family and two professional parents. Not everyone would recognize his gut/brain symptoms as cause for concern, but I notice that people tend to dismiss his speech delay because they rationalize his problems as minor due to his socio-economic/educational advantages. Yet autism cuts through economic advantages like a knife through butter--at least at the beginning. The non-autistic child has so much more advantage than the autistic child that it levels (temporarily at least) the most entrenched inequalities. Eventually, of course, those inequalities play themselves out in the life of an autistic child with the clear advantage being those with more educated parents and higher economic status. In that sense Ronan's chances are greatly enhanced for recovery because of you, and your awareness.


Acceptance is the one that I hate the most, because I see it as the stage which is least understood.

I've also worked numerous biomedical angles since our sons regression, but have yet to discover that big missing puzzle piece. And for some strange reason, many around seem to view that as not being able to accept our child for who he is.

Nothing could be further from the truth, or more insulting to me as a parent. I fully accept my child for everything he is, and for everything he's become since a stranger decided to carpet bomb his immune system.

What I DON"T accept however, is that I need to stop looking for his missing puzzle pieces. I believe that they are out there to be found. And as long I'm alive, I will continue all efforts to find them.

I think we need to seriously wonder about friends, family, or medical experts who try to tell us that accepting our children means surrendering all efforts to help them. Beyond the fact that it's wrong, its really none of their business.

Vicious Circle


No, I think understanding it maybe some kind of panacea but these things are going to come back at vulnerable times: also good news journalism does not help either.


Thank you for writing this article, Cathy. It does speak to what my husband and I have recently gone through. It's great to know that we're not alone. "Vicious Circle", I agree that fear and resolve can be a part of the grieving and coping process as well. However, I think the points Cathy was making in her article are #1- The relationship between the grief model she saw on the TV show vs. her own circumstances and #2 - How hard it is to take a break physically, mentally, and emotionally as special needs parents, and attempt a "normal" activity, even when we have the opportunity to do so. I do think Cathy also eludes to the the process being a cyclical process rather than a check off list.

Ana Maria Abba

Funny I just was going through a phase of acceptance.. or trying to.. right after the conference. I want to accept what happened in order to move on. I don't think accepting is the same as being complacent about it. Just that I know the past is done and all I can do now is do the best I can going forward. Living in regret is just keeping me in the depression stage and that helps no one.

Awesome article!

Ana Maria Abba :)

Jan Miller

Quote from Elisabeth Kubller-Ross - "The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern.
Beautiful people do not just happen."

Cat Jameson

Mary, thanks for posting the link. It's sure to help other parents as they cycle through the stages. I'd venture to guess that individual families could even experience other stages/emotions unique to their family's situation and add to their own grief cycle. That would be interesting to see what others have experienced. Cat

Vicious Circle

We are not talking about the finality of death so the stages keep on recurring exacerbated by indifferent or insensitive outsiders, and by circumstance.



There are two additional stages of grief in autism families. The first is FEAR, which is when our child first receives the diagnosis and the parent(s) get locked up, paralyzed, from the lack of direction from the traditional medical community. They also fear of the future for their child and family. Then there is anger, denial, bargaining/guilt, acceptance and finally RESOLVE to Overcome. This is unlike any other disorder where the grief model is applied. I wrote about the grief cycle and how it impacts marriages.

Also, unlike grief that involves death, the cycle repeats itself as our child goes through ups and downs. Just when we get to Resolve, our kid has a set back and we are back at square one in Fear mode.

Here is the article that was in Autism/Asperger Digest:

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