Autism For Parents

8 May 06

The five stages of autism

Filed under: Action,Autism,Confusion,Diagnosis,Planning,Understanding — Brett @ 1929

For many families, a diagnosis of autism in a child brings about a profound sense of loss. Since most people don't actively educate themselves about autism before the diagnosis – let's face it, no one thinks it can happen to them – most of what they know comes from what they may see, hear, or read in the media. Unfortunately, the vast majority of stories about autism in the media are about the 'devastation' of autism, of how kids are 'lost' in a strange and terrible world away from society.

As a result, I think that many people who find themselves facing an unexpected diagnosis slip into the 5 stages of grief. The link provides some details on the 5 stages, including some discussion of why some think they are not valid, but here are the 5 stages themselves:

  • Denial
  • Anger
  • Bargaining
  • Depression
  • Acceptance

These are the stages, as I understand it, that a person will go through if left on their own, if they don't receive any support or gain any understanding beyond the feeling of loss. One of my goals with Autism for Parents is to present an alternative to these 'default' stages that treat an autism diagnosis as a devastating loss with a series of steps that parents can take to fully understand their situation and go beyond mere acceptance.

Here are the steps I've come up with.

  • Diagnosis – the first step on the journey
  • Confusion – unavoidable for most parents new to the world of autism
  • Understanding – the process parents undertake to understand the situation
  • Plan – based on understanding gained in previous step, make a plan for life ahead (which is, in fact, something parents do with all kids)
  • Act – live life to the fullest, adjusting the plan as your understanding grows

In many cases, posts will overlap between steps, especially the Confusion/Understanding and Plan/Act pairs. With these steps, I hope to share actual stories from parents who have gone through these steps as well as simple (and some not so simple) checklists of things you can do.

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13 Comments »

  1. So well written! Thoughtful, insightful, and inspiring! Bravo. Thank you for sharing.

    Comment by Michelle Fattig — 16 Aug 07 @ 1616 | Reply

  2. * Act – live life to the fullest, adjusting the plan as your understanding grows

    I don’t know how to do this. Anytime I take my son anywhere, or try to do anything as a family, it blows up. I haven’t done anything in more than a year. He is 3 and getting help, but is angry, explosive, and doesn’t listen to a damn thing. Lately, in public, he will just run off.
    I don’t know which of the stages I would be in, but depression sure fits. I don’t know how you can’t feel a sense of loss. What will my son be able to do? My legacy is broken. I don’t understand how anyone can be happy with all this. Money helps. My son goes to school 4 days a week, and I feel like a monster, but it’s the best thing that’s happened to the family. Now I can spend time with my daughter without a impediment. I don’t know what I will do this summer.

    Comment by Casey — 17 Oct 07 @ 1241 | Reply

    • casey, I know exactly how you feel. Don’t give up, it gets better! I had 2 in diapers and a 4 year old autistic child who limited what our whole family could do, which was not very much. Screaming in restaurants, wandering off, going into peoples houses. After schooling and getting older, his behaviors got better and we got to do family things. He now has a job, drives a car (I never believed it would happen) and does pretty good. He lives at home and has no friends, but I never dreamed he would be this high functioning. I was told to put him in a home, luckily I didn’t listen. Hang in there, Anita

      Comment by anita — 23 Jun 10 @ 1938 | Reply

  3. Great article, but I’m wondering if you have any sources for your beliefs (as in research) or if its all based on personal experience. I will preface why I’m interested. I am a university student who has been working with families and children with autism for the past two years as an in-home specialized services aide (the ABA kind). Currently I’m looking to do some research on how parents of children diagnosed with autism cope. From my own personal experiences working with numerous families I’ve found the same kind of thing in parental grief (Kubler-Ross’s five stages of grief), but I have yet to find any academic study which supports this theory. IF such research where done it would be a great resource in developing government assistance for grief/bereavement counseling for parents, as I think is necessary. Any information you could give me would be helpful.

    Comment by Brian — 13 Nov 07 @ 1713 | Reply

  4. Brian,

    I don’t know of any academic (or otherwise) studies on this, what I’ve written is based on my personal experience and discussions with others.

    I agree with you that this would be helpful in providing a counseling resource for parents, though I would hesitate to call it “grief/bereavement” counseling.

    Comment by Brett — 13 Nov 07 @ 2012 | Reply

  5. Our daughter was diagnosed in January 2004 at the age of 2 years and 4 & 1/2 months by the HSE. This came as a ixed reaction of Disbelief and confusion as we were promised action which never came, so called early bird programme! This confusion has remained with us as we struggle to get services for our Daughter.
    Our daughter is in an Autism unit in a national primary school now, two counties away from home and on numerous waiting Lists for ABA and other services. She is now 6 years old.
    We are at the end of our rope as we are struggling to cope with a growing Autistic child that cannot communicate, is still not potty trained and lives in a world of her own. Everyday we fear for our daughters safety as we have to live in a environment with locked doors, destroyed furniture and almost every week we have to redecorate our home.
    We love our child and have always done the best for her, but we fear for her future. We will never give up on her.
    Our lives outside the home is also hard. Another person to witness her tantrum results in a stare from them. This proves to be a stigma for us as alot of people will tell us off as bad parents, whether they say it or not, worse they will look at our daughter as a spoilt brat. Which she is not.
    Those five stages we experience everyday. We turn on each other because of it. But we recongnise them and we are glad the Author does also.

    Comment by Martin & Shirley — 16 Dec 07 @ 2137 | Reply

  6. [...] child without having everyone in the public around you staring, in disbelief of what a terrible parent you [...]

    Pingback by Watch Me Learn » Blog Archive » handicapped or just ‘handy’? — 29 Jan 08 @ 1811 | Reply

  7. I am interested in conducting a survey of parents of autistic children for a book project. The purpose of this survey is to collect short stories from the parents of autistic children in relation to Joint Attention Skills (or lack there of)detected during the pre-linguistic time period. Names of participants are not needed, thus those parents who complete the surveys will remain anonymous. All observations that the parents can recall of their child before the age of 2 years old is of interest. The information gathered will be used for a book to be published on Autism in hopes it will be useful to other parents.

    Thank you for your time and consideration of this request. Please do not hesitate to contact me if you have any questions.

    Comment by riza — 16 Aug 09 @ 0450 | Reply

    • hello my name is arlean and I’m a photo major and I have do an assignment of 4 pictures that tells a story of something so i thought it would be a good idea to take picture of something regarding autistic children or maybe something on what the parents go though. Do you have any connection or any ideas as to where to start? Thanks for your help.

      Comment by arlean mitchell — 20 Nov 11 @ 0814 | Reply

  8. My son is functional, however; he has been diagbosed with autusim. He is in his 30’s and did not receive special training. His parents, his father ande I were divorced and I was not aware of this screening until recently,
    His lack of communication is limited, but functionally is sociable, soewhat withdrawn.
    He is not able to be employed. I feel his father has been an enabler and has created many problems for the son.
    Please,tell me if autusin has various catagories, my son has his license and car
    and functional in many ways,I feel with proper stimulation his quality of life can be immensely improved.
    Any assistance will be appreciated.
    Thank you in advance,
    Betty Heckman

    Comment by Betty Heckman — 16 Feb 10 @ 1610 | Reply

    • I would like to receive additional information on autusim. My son has been diagnosed.

      Comment by Betty Heckman — 16 Feb 10 @ 1613 | Reply

      • Look into Applied Behavior Analysis. Reinforcement therapy and shaping techniques work on children as well as adults and ABA is the most successful treatment thus far.

        Comment by Season Weeter — 15 Sep 10 @ 1625

  9. it is of great solace to find ablog like this at least u r not alone the hands on experience of other parents is areal source of strength and learning

    Comment by joydeep sen — 13 Aug 10 @ 1337 | Reply


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