Is It OK To Grieve When a Child Is Diagnosed with Autism?
Sunday June 25, 2006
When a couple is expecting a child, they dream of the future. For many Americans, that imagined future includes family outings, soccer games, college, career, wedding, grandchildren... Of course, there's no guarantee that any child will fulfill all of a parent's dreams. But when a child is diagnosed with a lifelong disability like autism, those dreams may disappear in a puff of smoke.
Is it ok for a parent to grieve over the loss of the child they imagined? Grieving is natural -- but feeling that sadness all day, every day is overwhelming.
Drs. Cindy Ariel and Robert Naseef offer insights and experience around just that issue.
Comments
Grieving because your child is diagnosed with autism? Why? Did the child die? No! Okay, so grieve for a little bit; you can only feel what you feel. But don’t ever look at MY children with autism and expect ME to grieve! I wouldn’t change my children for anything. I love them unconditionally. I guess I should say thank goodness your child wasn’t diagnosed with something REALLY horrible, like a fatal cancer or a mental illness that makes them suffer! damiensgram@yahoo.com Got a problem with what I’ve said? Write me!
I disagree that a mental illness would make my son suffer less than his disabilities. He is diagnosed with autism and mental retardation. He does suffer. Maybe your kids don’t, but mine does. I have three typically developing children, and this youngest son has had way more unhappiness and suffering because of his disabilities. I’d have to be pretty insensitive not to grieve in his particular case — again, I’m not talking about your kids. He 12, and he struggles so hard to speak clearly like a regular 3-year-old. He gets really upset about this! He gets very upset and acts out when he can’t understand the conversation around him — which happens often. He can’t understand many concepts, like why things can or cannot happen, and these cause him to be very, very upset. Yes, he suffers! Yes, as a parent I grieve because it hurts me to see him suffer.
In my case,the happiness is gone for ever.I know that will effect some how my performance in general.Just trying to do my best.I hope that I’m a different person.
Grieve? Perhaps I did at some point and there are times where I still feel “woe is me” (mostly when I am amidst a temper tantrum that I don’t see an end to and I am at my wits end). HOWEVER, my son is very mildly affected and is very high functioning, so in meeting with families with low functioning children, it puts my grievences in perspective. I also have another child who is mentally gifted and he can certainly make life hard as well. Would I rather have 2 children in the middle of the board? Yea! But would I trade either one? No way. It’s hard to raise children no matter what the circumstance. A typical child can certainly cause as much, if not more, havoc than a special needs child. I have found more solace in accepting my children as they are, then for wishing that they were different. I expect difficulties in certain situations with each one of them, and that’s just the way it is. There’s a wonderful story called “Welcome to Holland”…I have sent this to all of my friends and family and it really hit home. Here’s the link if anyone is interested in reading it. http://www.our-kids.org/Archives/Holland.html
Best of luck to you all….Nica
Our son is 12 and autistic. I truly believe that the grieving never ends, it just gets easier to bear. I can honestly say that the first year after learning of our son’s disability was the worst. It does get better over time, but it never really goes away. And it will sneak up on you when you least expect it. Many other parents I talk to agree that you take one day at a time and try not to think too far into the future. You will never stop comparing your child with other typical children — that is human nature. Despite all that, I also would not trade my son for any other child. I am so very fortunate that he is able to show love, affection and empathy for others. I have a friend who always tell me there is a reason God gave my son to me — and I know in my heart she is right even on the most challenging days. God Bless all of you moms and dads who hang in there and do what is best for your autistic children. Keep fighting for what is best for them — you are their best advocates!
My oldest son was diagnosed with autism at 2 1/2 years old, it took me a while to admit to it, I refused to accept that my son wasn’t like all the other kids. Me, being a single parent, had to adjust and understand, as well as I could. He is now 14, 6 foot tall, is an A/B honor roll student, and plays several sports with the special olympics. I don’t think that I ever grieved for him, even though I do, from time to time, feel bad for him, that he has not had the type of childhood that other kids have had
About grieving, yes I grieve. I grieve for myself. My world has forever changed.
It often sounds like we’re talking about two different things here — and the one woman who talked about the differences between high and low functioning. It’s easier if your child is high functioning, and like another woman’s son quoted above, on the honor roll, etc. But if your son is like mine — 12 years old and reading at a k-1 grade level, frustrated often because he is completely confused about most aspects of the world, and hurting because he really wants to be able to do things he sees kids younger than him doing with ease — then it’s a different matter. He’s affected physically — both gross motor is awkward, and fine motor is very poor (writes with a preschool scrawl, can’t build with Legos, etc.) - he’s affected mentally — can’t understand things around him, and emotionally — doesn’t have enough conceptually knowledge to figure out how to handle his emotions. Greiving is quite appropriate in his case, and like others have said, it waxes and wanes.
I have three boys who are on the spectrum. The two older ones are high functioning Asperger’s, the youngest has classic Autism. I am very positive but at timesm I can’t help but grieve. Although the two high functioning, it is still very hard. They do fall through the cracks very often. I adore them but I wish they didn’t have to suffer with the anxieties that they have.
I can only wish all parents who deal with Autism lots of strength!
Pam
Two years ago I first heard that my daughter -who I thought had, at that time, hearing problems- was in the autistic spectrum. That same summer my own father passed away and my mother -who was until then very healthy, was diagnosed with brain cancer. Did I grieve? Yes, for everyone, for my parents, for my daughter. At first I was shocked, read many articles, and cried. Basically, I was worried for her, for her future. Nowadays I have learnt that these experiences, while difficult to cope with, have taught me that I have to cherish life, whatever form it comes. It does not mean I do not cry from time to time, but I have stopped worrying about issues that are not worth it, or that I cannot solve in the short term, and instead decided to focus on things to do one day at a time. I applaud every new word she says, every improvement, and only that keeps me going.
My daughter was a happy baby who loved to be cuddled. When she was 2 1/2 that changed. It was like the baby I gave birth to died and was replaced with a child I didn’t know. I still loved her more than anything in this world but, I had to create a bond with her all over again. Sometimes I still feel like I had 2 babies instead of 1. I don’t think that pain ever goes away, you just learn to live with it.
Grieve. That’s always going to happen when we see our child not being able to accomplish what is so called the norm. That’s ok. You’re ok. I have also allowed myself to hate the bad side of Autism. I also allow myself to love the good. My son now 15, has some of the most fantastic thoughts. It may take a couple of days to get all of that thought but is well worth the wait. I hate Autism when others try to include him in a conversation and he grunts. Therefor he is left out. When he has no friends, thats when I hate. You see, thru every storm there is a glimp of sunshine. However short it may be. Enjoy that moment.
I made a prior post about my highly functioning autistic son. Well, we had the WORST day today. I’m not sure it’s called “grieving” but I sure do *wish* he were “typical”. I can’t fathom that anyone wouldn’t have the same *wish* for their autistic child.
Much luck, Nica
All I know is that when I was growing up in the 1980’s, we were taught how to handle the gifted child, and what to do if your child was mentally retarded or had a physical disability. But the hardest part of having a child with Asperger’s is that you are constantly in a gray area. You’re constantly in the middle, in a no-man’s land, where some days you don’t even know why your child is different. Yet, other days, the reasons are all too painfully clear.
My son is adopted we knew he had a mental illness when we adopted him. However we reciently found out he has aspergers syndrom, it was part relief, part grief, he has also been diagnosed with bi-p0lar, ODD and he was molested at a very young age. We now have a very large, very aggressive, sexually acting out 15 yr old that we must home school and have someone watch at ALL times, do we grieve, you bet! for him and for us, we couldnt even work until the last year. We have no services available to us and it is really tough.
I spend my life trying to keep him out of an institution, I am slowly losing the battle. I grieve for such a lovely life and spirit destroyed by others.
Everyone is going to have different experiences with grief. I have a 9 year-old son who is autistic and my husband and I agree that April 29th, 2000
(the day we confronted his condition head-on) will forever be an emotional turning point in our lives. We have okay days and horrific days, because this condition has changed our whole family. Somehow with friends, family
and faith, we survive. ‘Kudos’ to each of you living through this ’surreal life’ in trying to deal with all of the
issues in the best way you possibly can.
God bless each of you…Michelle
To CYNTHIA WHITFIELD ~ I am sorry that I offended you… and I can clearly see how others grieve. I was put in my place, and for that I am truly sorry. I guess I mistook the topic, thinking to grieve what my children would never be. Just because I accept them 100%, yes, I guess I DO grieve that they didn’t have a ‘normal’ childhood. And to all the others who posted, I think I see the grieving question from a new perspective, and I join the ranks with all of you other parents. My son, 11, DOES suffer. I wouldn’t wish this on ANYbody. So thank you all for allowing me to see things differently. Whoever would like to keep in touch, here’s my email damiensgram@yahoo.com
Autism is very grey as a disorder. It can be percieved as good and bad. I have aspergers syndrome and I went to a communication disorder unit in primary school with kids who were on all different parts of the spectrum. I mostly remember having very fond memories of that place and w were very close-knit. They taught me, not only some of the skills that I needed to integrate into the mainstream but also that I wasn’t a mosnter like the media always liked to make auties look. My mother took a while to get over it but she eventually accepted it and I HUGELY improved. I can’t imagine a life without Aspergers, really. Anyway, I’m guessing that people are mostly talking about classic autism here, so I guess that I am not the best example.