4 Stages You Don’t Have to Go Through

A recent article landed in my Google news aggregater, “Child’s Autism Diagnosis: 4 Stages You Will Go Through”.  Unfortunately, for all of its cheery helpfulness, it still manages to perpetuate some common stereotypes and misconceptions about disabilities:

When you hear that your child has been diagnosed with autism, the worst thoughts come to your mind. You can feel scared, lonely and overwhelmed. All of these feelings are natural when dealing with a new situation, but it doesn’t have to be terrifying.

Seriously.  The author assumes that the experience of getting a diagnosis is automatically horrifying; the first two sentence are loaded with negative words: worst, scared, lonely, overwhelmed, terrifying. Parents may feel these things at times, and for any number of things, including the sleep-deprivation of newborn care, or even dropping your child off for the first day of preschool or Kindergarten and experiencing the fallout of separation anxiety.  But the process of receiving a diagnosis is described like slogging through of an abyss of despair, with the “4 Stages” listed as 1.Denial, 2.Anger, 3.Grief, 4.Acceptance.

A problem with riffing on these “stages of loss” (familiar to anyone who has taken Psych 101), is that although there is evidence that many people do experience such upon receiving various diagnoses, the very presence of articles such as this may serve to reinforce the despair as much as they seek to lighten it.

How so?  Firstly, many people in various support industries related to disability (including educational and social work realms) are taught that people will go through these grieving stages, so they may understand why and how people experience such, and therefore how to support them.  Unfortunately, this means that they expect people to go through these stages, so don’t realise that not everyone does, nor even needs to.

Secondly, while articles like this help parents (and others) understand such feelings, they can also magnify such feelings, or even reinforce or create such feelings.  Well of course, it’s only natural you’re going to feel that way, and of course you will also experience all this other Sturm und Drang.  Likewise, support groups and discussion boards are rife with such.  Although they allow people to vent frustration and commiserate, they can also perpetuate and sometimes increase such despair.

In novel situations, people will pick up the social clues about how they are “supposed” to act and feel, and the clues can magnify or squelch the original actions and feelings.  These social clues come from articles, news stories, books, radio and television programs, online videos, blogs, discussion boards, local support groups, even conversations with others in the local community.  In other words, social expectations can create self-fulfilling prophecies, “My kid’s just been diagnosed with autism (ADHD, dyslexia, APD etc.), so now I’m heart-broken and my life will never be the same.”

Shockingly, such stages of grief are not automatic, and not everyone goes through them.  Support workers should also know that if someone is not exhibiting such grief stages, that does not automatically mean they are “in denial” — they may already be in acceptance and have skipped the crisis altogether.

Guess what:  getting a diagnosis may not be a “crisis” at all!  Yes, it will be a major life event, a turning point.  It will be the culmination of many ups and downs, and the corner turned that initiates many other ups and downs (such is life). But it doesn’t have to be a crisis.

Here are four stages you might go through instead.  Keep in mind that these aren’t linear — you don’t necessarily start at 1 and go sequentially to 2 then 3 and end up at 4.  Rather, you may find yourself switching between or even experiencing a couple at the same time (think of overlapping sets in a Venn diagram, rather than a number line).

Relief

Oh, thank goodness!  Things finally make sense.  “Of course! Why didn’t we figure this out sooner?”  Over time, with our new information we realise that a lot of other things make more sense, too.  *whew*

Validation

You knew that something was different, and now you have an Official Diagnosis to show your extended family, friends, neighbors, school, or office that, “Yes, I’m not being lazy, stupid, or hypochondriac.” (And yes, I actually know what I’m talking about, more often than not.)

Momentum

A shiny new diagnosis gives you the means to move forwards and get some assistance, accommodations, treatment, medication, or whatever else is appropriate in your case.  You are now un-stuck from the limbo of the have-suspicions-but-undiagnosed.  Whee, progress!  “Outta my way, sob-sister, I got things to do and people to be … we are gonna effect some positive change here.”

Camaraderie

“Hey, I’m not alone!  There are other people out here dealing with the same issues!” They can help me figure out how to do things, how to get what I need, and I can learn from them so I don’t have to re-invent the wheel.  Plus, they provide moral support when I’m down, and an ear when I need to bitch, and they will serve as reality-checks and let me know when I’m being foolish or spouting off nonsense.

PROGRESS:  YOU MIGHT BE GETTING IN THE WAY
(instead of leading)

Several large bison blocking a dirt road

Several large bison blocking a dirt road

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18 Comments

  1. 3 December 2008 at 23:36

    A recent article landed in my Google news aggregater, “Child’s Autism Diagnosis: 4 Stages You Will Go Through”. Unfortunately, for all of its cheery helpfulness, it still manages to perpetuate some common stereotypes and misconceptions about disabilities:

    Nothing new there then, typical examples of somebody that knows b**ger all about disability or life in general.

  2. New England Mom said,

    1 December 2008 at 1:11

    You are absolutely right. My daughter was diagnosed a couple of years ago and your stages are how it actually felt. Then I just studiously tuned out everything that the medical professionals had to say because they are so full of doom and gloom and work ever so hard to convince parents to accept their grim future scenarios. Parents who don’t accept them are “in denial”. I don’t accept them but am glad of the label because it:

    1)explains a lot

    2)gets my daughter the services she needs

    3)helps me hook up with other parents.

    I haven’t met any of the parents in the “Ohmigod my kid is a soulless vegetable shell” camp which is good. They are hopefully a small, although vocal, minority. They also seem to be the ones writing most of the memoir books too unfortunately.

  3. Penny said,

    28 November 2008 at 17:37

    Whoops, that was me. Used the wrong account.

  4. notpennysboat said,

    28 November 2008 at 17:36

    Relief, relief, relief. Yes. That’s the thing I remember first. My son got his diagnosis at one week (rare chromosome disorder)–so it was the relief of “he’s going to live! this isn’t fatal!” I was crying in the meeting, but at least 70% of the tears were from relief.

    Camaraderie came later–his diagnosis doesn’t have a name, and he was born before the internet became quite the force it is today–so, no websites, no message boards, and I didn’t even have an email address or home internet access at the time. But it’s definitely an important aspect of accommodating the news, and I’m glad new families can access it so much sooner.

  5. storkdok said,

    28 November 2008 at 15:17

    Excellent post! and the above suggestion of better diagnosis-related counseling is very good. If parents of newly diagnosed children are not given correct information, that autism does not mean no progress or doom, that there is now substantial evidence our children learn and are happy, and if they were given the tools they needed for home, instead of having to figure it out on their own, they would most likely not go through Kubler-Ross’s stages of grief.

    I do have to say, I have had a lot of patient’s grieve over losses that others do not. Much of grieving is individual, and how you handle it depends on your outlook on life in general.

  6. qw88nb88 said,

    27 November 2008 at 19:19

    OneSickMother,

    Your “punched in the gut” feeling is one of the very reasons why we need better diagnosis-related counselling. To be sure, the very existence of diagnoses implies problems, and people will be distressed on that account. However, we do want to have balance, and to also be able to explain that problems do not equal doom nor do they equal lack of progress. There are also (despite the problems) the potential for some things to come with compensatory skills in other areas.

    When giving diagnoses, we need to be able to provide balanced perspectives, concrete recommendations for interventions and local assistance, warnings about some of the types of scams out there, and most of all, empathy and hope. No one should have their family wrung through the diagnosis testing wringer, be given a label and brief catastrophic description, then sent out to the wilderness to deal with everything on their own.

    andrea

  7. shiva said,

    27 November 2008 at 14:21

    Excellent post – i touched on similar issues, albeit in passing, in a recent-ish post here: http://biodiverseresistance.blogspot.com/2008/10/revolution-will-not-be-teleologised.html

    My experience was somewhat similar to Andrea Shettle’s; however, the essay which i found most helpful and most in alignment with my own feelings (in fact, reading it was what prompted me to seek “official” diagnosis rather than just stay self-diagnosed) was Jane Meyerding’s “On Finding Myself Differently Brained” (and the follow-up “Why Label?”): http://mjane.zolaweb.com/diff.html

    I will add this post to those for links to use as a response to people who view diagnosis/labelling as a negative thing…

  8. Bev said,

    27 November 2008 at 1:46

    First rate post, Andrea! Very much appreciated!

  9. Maddy said,

    26 November 2008 at 20:55

    A great and fresh perspective.
    Happy Thanksgiving

  10. 26 November 2008 at 20:31

    I think there is a significant difference in being diagnosed oneself and having a child diagnosed. I was diagnosed ADHD as an adult, and there was no blow at all. I definitely went through a lot of those positive phases you described as well as another one:

    Forgiveness. I finally forgave myself for not being like other people.

    However, having my child diagnosed Autistic was a different story altogether in my experience; because this is a person whom it was my responsibility to grow into adulthood. I did go through a lot of the negative stuff at first. Even though I had been fully EXPECTING the diagnosis, I still I felt like I had been punched in the gut.

    Later, the four other things came, and well done for pointing them out. But initially, yeah. I wanted to drive off a bridge. I’m not ashamed to admit it.

    One Sick Mother.

  11. yanub said,

    26 November 2008 at 16:49

    Wow, Andrea, this is a much better list of stages than the commonly misapplied Kubler-Ross list. After all, Kubler-Ross was dealing with people facing death, not dealing with people who are puzzling out how to live their lives. Yes, there is frustration and anger, but that is with an unaccepting society, with bone-headed professionals, and the nuisances that come from daily challenges yet to be figured out. Thank you for this list!

  12. Norah said,

    26 November 2008 at 16:40

    A lot of people also seem to expect that there was a great shock of being diagnosed autistic (especially if you’re diagnosed as an adult). I experienced no grief, anger or denial, and no shock either. I don’t know if acceptance even applies. As far as I can see, there was nothing to accept: it’s not like I had changed in some major way.

    The first time I went to see someone to get some assistance etc, they told me: “Wow, that must have been such a shock hearing that, and you seem so calm about it! Must have been so much to work through!” (or something like that). I was like: “Bwuh… wha? O_o”
    Little did I know that I would get that a lot along the way of finding assistance.

    I did experience quite a bit of camaraderie, some validation, and momentum (though I don’t know… momentum? :D It takes SOOOOOO long to get even the smallest assistance arranged. More like tedium :D).

  13. 26 November 2008 at 14:05

    @ Andrea Shettle,
    oh, good point also, I did have that regret, too, for a while, before deciding it’s not productive to fret over the past, and see more into the future and all the possibilities that lie ahead.
    It’s tough, sometimes, in darker moments I think, why couldn’t I have known this 20 years earlier..

  14. Beth Nixon said,

    26 November 2008 at 13:15

    Your four stages are EXACTLY what I felt when dealing with my son (not autistic but auditory issues).

    Just knowing that there was something . . . and a place to start working . . . was a joyous thing.

    I’ve never mourned him. He’s a fantastic kid. He does things differently, not wrong.

    Thank you for your post. I’m going to write down YOUR four stages for dealing with all sorts of life challenges!!

  15. 26 November 2008 at 12:59

    I, too, experienced these four stages when I was diagnosed as having attention deficit disorder. I was in some ways 99% percent ready for the diagnosis (having already figured it out on my own) but needed to hear the words more officially from the psychologist before I could really let myself start processing what it actually *means* to have ADD.

    But I did also experience some grief — not at having ADD per se, but grief for all the time I felt I had “lost” by not knowing about this diagnosis so many years earlier. I had consumed so much energy beating my head against the figurative brick wall blaming myself for not living up to everyone else’s expectations for what a “smart person like me” *ought* to be able to do (such as, zip through certain kinds of assignments in the blink of an eye, rather than get stymized because it’s that hard to just *focus* on them long enough to make meaningful progress with them). When instead, I could have been using that energy to find more effective ways of improving my productivity in areas where I could, and learning to accept that, YES, it really DOES take me longer to accomplish certain kinds of tasks, in part because, YES, I actually DO need to take more frequent, longer breaks than other people do. In fact, learning to accept the latter helped me with improving my productivity because taking breaks on a schedule that works for *me* — not the schedule non-ADD people *think* is supposed to work–has helped me be more productive when I actually *do* sit down to work.

  16. Jen said,

    26 November 2008 at 11:58

    Nicely written. I think that one of the most helpful things that the “autism community” (whatever that is) can do is to give newly diagnosed families some positive information- I know that when I hopped online when my kids were diagnosed in 1997 there was absolutely nothing positive to be read anywhere.

  17. 26 November 2008 at 11:32

    Good post, and one that ties in with my experience of the diagnosis issue as something related to the quantity and quality of knowledge one has about ‘being autistic’.

    When I got my diagnosis, I actually did go through the four stages above. Why? Because I knew precious little about autism/’being autistic’ and what I did know was not of the quality of that which I know now. When my daughter was diagnosed, there were no four stages again; rather, there was precisely the set of four states that you delineate in your post. And why was this?

    Well… because I had more knowledge and better knowledge by the time she was diagnosed; in fact, I had enough to know how to make the diagnosis myself (which I did as an exercise in my post-graduate studies in educational psychology). And, with this more and better knowledge, I was able to essentially put the fear of prosecution into the neurologist who was trying to refuse to diagnose properly (they rang my then-wife a few days after to tell her they were changing the diagnosis from ‘selective mutism with features of Asperger syndrome’ to ‘Asperger syndrome with features of selective mutism’, the second of which was much more accurate).

  18. 26 November 2008 at 6:50

    Great post!
    Those were exactly the stages I went through, when I got diagnosed.
    I was also very relieved that my problems were not caused by a nasty brain tumour.
    I hardly knew anything about Autism, when I got diagnosed, but one thing I did know is, that it is not like having cancer, a thing so obvious, there’s no excuse for such excessive grieving.


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