Grief when child is diagnosed with autism or a disability – information how grief is interwoven with depressionThere is so much information on grief over death but not as much about grief when...
There is so much information on grief over death but not as much about grief when child is diagnosed with autism and how depression follows for the parent.
My daughter is now 14 and was diagnosed with autism at age 7. Her diagnosis *should* have come much earlier, but even as late as 1997, autism was not widely recognized and there was a misconception that girls were not often afflicted.
Dealing with grief and depression is an on-going struggle. As parents, we want to believe that this is a stage, and that we will eventually get over it and/or our child will "get better."
I should say that my child *has* improved but the depression and grief process is continual and NEVER goes away. For example, it is unlikely that she will ever date, go to college, or have a job. It's very painful to watch other people's "normal" children achieve these milestones. There is also a great deal of fear about her future and what will become of her when I am no longer able to care for her.
One of the ways I deal with the pain is to become involved with other parents who are going through the same struggles. While I appreciate the support offered by people who don't have to deal with autism every day, it just is not the same as conversing with people who *do.*
Facebook has a great number of groups in which those who deal with autism can find solace. I started one myself and there are literally dozens out there.
The amount of stress a parent goes through cannot be underrated. Recently, a study came out that compared the stress level mothers (and fathers) go through, coping with the needs of autistic children to be at the same level as a combat soldier.
You can read that article here
Every person today knows of a relative or friend who has a child with autism. A family member of mine was in denial for the first ten years of her daughters life. Everyone knew something was wrong, but the mothers depression and grief actually stood in the way of her daughter getting the help SHE needed.
The mother finally realized that no one is ever prepared for a diagnosis of autism. She gradually understood that so many other parents were also experiencing actual grief, as if someone died. It is painful to love so much, to want something so bad, and not get it. You want your child to get better so much and when they don't many parents actually go through the typical stages commonly associated with grieving. Those stages can include shock, sadness, anger, denial, loneliness and (hopefully) acceptance.
My sister-in-law, has just in the last several months come to acceptance. Just this week she created a website to raise money for autism. She made necklaces and bracelets with her daughters name on them and the word "believe" and "hope". Once parents know they are not alone - they can make incredible differences in the lives of others.
While I do not have an autistic child, one thing that another mother has told me has helped her is to discover accounts of people who have autism exceeding expectations. One inspiring account that I read recently is by Dr. Temple Grandin who was largely misunderstood by people because of her autism. If you don't have time to read her book, you might consider checking out her website at this link: http://www.templegrandin.com/ or watching a recent film about her life. It's entitled Temple Grandin. While the range and varieties of autism are vast, Dr. Grandin's story provides a firsthand account of her struggles and her unique perspective on dealing with those struggles.
Grief experienced due to a death can really apply to other situations as well, such as divorce and certainly autism or any other devastating diagnosis. Naturally there will be more articles and literature on death since it has happened since the beginning of time. Autism is still being heavily studied. In due time, the information on autism will increase.
Thank you for sharing your story Jamie.
Time does not heal all things, no matter how many times people utter this platitude. Death's grief does finally subside with time, it is true. However. with living children, their problems are constant and remind the parents of the burdens they must bear. Anton Chekhov once wrote,
Any idiot can handle a crisis; it's this day-to-day living that drives people crazy.
Maria- I love that quote!
As for the person who mentioned Temple Grandin. I adore her, adore her work, but honestly, she is very much the exception to the rule, the "Rain Man" of my daughter's generation.