Are mothers of autistic children more likely to be depressed?
April 18, 2007 by Kristina Chew, PhD
Filed under Health
Are mothers of autistic children prone to depression?
(If this seems a, well, depressing topic to you, the end of this post is positive and upbeat.)
A new study published in the April 2007 issue of the journal Family Relations suggests that mothers may be “if they feel responsible for the cause or outcome of their child’s disorder,” as an article in Reuters today notes. The study is entitled Ambiguous Loss in Families of Children with Autism Spectrum Disorders and its author is Dr. Marion O’Brien, director of the Family Research Center at the University of North Carolina at Greensboro. The article abstract notes:
….it is proposed that a diagnosis of an autism spectrum disorder (ASD) is especially likely to be experienced as ambiguous loss. Interviews with mothers of children with ASDs are used to identify whether mothers express feelings of ambiguous loss when talking about their child. Then, a specific hypothesis derived from ambiguous loss theory—that higher levels of identity ambiguity in mothers are linked to higher levels of depressive symptoms and perceived stress independent of the severity of the child’s diagnosis—is tested and found to be supported. Recognition of ambiguous loss in families of children with ASDs would help professionals provide more effective support and assistance to families.
“Ambiguous loss” is “the conflicting feelings and ideas caused by finding out your child is different from the one you’d expected to raise,” according to the Reuters article Reuters . O’Brien notes that parents of autistic children have to “constantly balance optimism with realism” in nurturing hopes for their children along with understanding that “they have a lifelong, serious disorder.”
Another discussion of depression in mothers of autistic children has been going on in one of the forums at the Interactive Autism Network (IAN). While O’Brien’s research focuses on depression in mothers after their children have been diagnosed with autism, the participants (many mothers) in the IAN forum raised the question of mothers who had depression before their children were born, as well as of mothers who became depressed after a child’s diagnosis.
O’Brien notes that “most families with autistic children are highly resilient, and with time learn how to deal with their challenges” and with the uncertainties—-this I more than agree with.
Because I know so many, many familes, parents of autistic children, and autistic persons themselves who are, yes, resilient.
Resilient and optimistic because we love our children and in the end that is what matters most. It would have been easy to become depressed and stay angry and overwhelmed if I was constantly trying find blame. Instead I have found it helpful to take control of her education and trying to become a state advocate so that changes can be made to help all children and families with disabilities. I think there are a lot of depressed mothers with or without a diagnosis of Autism, mostly due to the fact that we expect perfection where their can never be any. We are human and flawed and that is okay.
Well and strongly said!
I have never been a person who gets depressed..
That never changed when Mark was diagnosed with autism either.
I think maybe that some people are pre disposed to depression.
I have been through some very tough and trying times in my life, but have always retained a positive outlook.
Guess I’m a glass half full kind of person!
I’m not ambiguous at all – ha! I went to grad school to major in early intervention, and hopefully will be admitted to the autism specialist postgraduate program next year. Stressful? Yes, but any single mother of twins in grad school with no financial resources (other than mortgaging her future) would feel the stress! j
-Susan
Mother to Jakob, identified as autistic by me at 16 months, and “diagnosed” at 22 months, and his twin sister, Autumn, who was just screened for autism this morning, and “failed” the screening.
I have had chronic depression on and of since I was a kid and major depression at 11. So my son having autism can’t be blamed for any of that.
LB, thanks for sharing …..Susan—I’d have to say your plate is full.
It was in the time when we knew “something was wrong” with Charlie and his being diagnosed that I felt the worst, but denial, not so much depression—I suppose that was my “ambiguous” period. It was when we learned what we could do that I felt empowered; not stuck; hopeful.
Always hopeful.
ONe thing I can say: trying to get services out of the school system definitely does NOT help depression.
I doubt mothers of chilren with autism are any more likely to be depressed than any person under stress, or any mother of a disabled child. It probably is more relevant and useful to ask if depression is more prevalent among parents with limited support networks.
Definitely predisposed for me.
What are they driving at? ???
O’Brien mentions providing mothers who are depressed (after a child is diagnosed) with appropriate support services, such as family therapy. Not sure if there is any sense of needing to make sure mothers are “mentally well” to ensure they can propertly mother their children.
I can completely understand the value of that approach. My 3 year old has multiple disabilities in addition to being newly diagnosed with ASD (still fighting for THOSE services with his school!). I live in a moderate-sized town on the east coast and there is so little support for parents. What support there is requires a lot of effort to access—I’m talking about driving-45-to-60-minutes-each-way-at-my-son’s-bedtime-and-I-can’t-get-a-babysitter kind of of effort to access. The way I have handled my own predisposition toward depression-driven “paralysis” is by (a) taking better care of my body (when I am healthy I have better coping mechanisms), (b)getting involved where and when I can with advocating for early intervention and early diagnosis, and (c) reaching out online. I have only recently discovered some of the amazing blogs out there written by even more amazing women. If I can’t “go to the village”, I can sure bring “the village” to me! LOL
I am the mother to four kids, a ten year old with chronic ADHD, a four year old who is blind and was diagnosed autistic after we discovered we were pregnant with twins. And now 16 month old twins, the boy twin looks to be autistic and is also blind.
This experience has pulled my husband and I closer together and has “enriched” our relationship in many areas if I can call it that – but we lack basic things that our friends and people around us take for granted and which we crave so desperately.
Sleep for one as we average around three hours a night.
Time alone together as we have no-one to watch our children for us (or at least no-one we would trust with them)
Financial stress as we try to pay for ABA therapy which is unbelieavably expensive
A feeling of being “in the public eye” constantly as people whisper behind our backs, turn to stare quite blatantly or stop in their tracks to give us a good look.
Joeymom is quite right – it is the lack of support that is depressing, not so much their condition. We learn to deal with their behavioural issues and we find ways of working around sleep deprivation and even the financial stress, but not having someone who can come in and watch my children while I sleep or give my wonderful husband and I some time alone -t hat is the worst.
I never experienced depression or such chronic sadness or such a feeling of isolation before we were in this situation so I’d have to say in my case yes it has caused a depressed state – even though we try to remain on top of it and try to retain an element of positivity as much as we can.
I do have a something to add, I have 4 children, 2 at home, they are 5 YEARS OLD with Autism, I have a 13 and 10 year old, I went thru something, I still to this day,can’t tell you what it was ,I don’t what they call it now, but I know I was going thru something,I lost my oldest boys to their grandparents,because they thought I couldn’t raise them, but I was able to raise Autistic Twins!! I think that it is very odd! but I can’t change the laws now,I think the Media needs to look deeper, Autism goes much deeper than people think! I wish I could go back before my deppression and get my oldest boys back! I know I would of done a really great job, giving the chance,It’s a really hard thing, raising an Autistic child, just think how hard it is raising Twins! I wish there was some real help, one child is hard, 2 is really hard to explain to someone who doesn’t understand,let me know what you think, I would ,love to hear from you.
For me it is not necessarily depression but the lack of support…the need for a break…the need for people to understand that he isn’t going to be just fine, that he’s not going to pop out of it, that no matter how much he gets better he still takes a toll on me.
Not to be selfish but they always look at him and see how good he is doing but they fail to look at the sleep deprived, anxiety ridden mom who puts her heart and soul into the child. They fail to give her a hug on her down days or take her shopping when she needs a girls day. They fail to compliment her on what she has done to get the child to where he is…they just see how good he is doing.
Hi
I met someone who has an autistic child abt 3 yrs old. She lives in India and is really concerned about the social stigma she and her family will be subject to if they know of her child’s condition. Basically, she’s quite young, well educated but with no opportunity to work. She’s going through some depression. Any tips on how she can cope? Any tips to make her feel better about herself and her situation?? Thanks
I have found that my depression it a direct result of my child’s autism and the lack of support and respite care. I taught school for 12 years and led a very independent lifestyle. Our first son was “normal” (this is a word I hate to use), but our youngest was diagnosed at 14mos. I am now a living shell of what I used to be and just a caretaker trying to get by from day to day living in my home that has now become a prison because I cannot take my son with autism out anywhere in public–he’ll just cry and or scream and try to run off. He’s had therapy since age 17mos. and has come a long way, but I intended to go back to work on a part time bases this year and now realize that may never happen. I’ve lost friends because I cannot stay in touch with them-they all work full-time, and I could not return to work. So I feel hopeless and lost. If you know any resources for respite care outside of DDD. Please email me…thanks.
I am leaving the doctors office today with a perscription for an antidepressant and anti-anxiety medications. Symptoms: sleep 3 hrs a night(not consecutively)and not because of the kids-they sleep fine, feel like someone is sitting on my chest, sweating for no reason, mind is racing constantly, crying all the time, feel like my windpipe is closing in whenever I get upset. My son is 5 and he has autism. Its true, I am heartbroken and I find myself getting angry at the fact of what may never be. He was diagnosed a yr and a half ago and the disappointment of trying to get what he needs through the school system is almost unbearable. So, I drive to another city and pay for ABA therapy which is more than a house payment. I constantly search for services and try to educate myself. I read the articles of the mothers who are in the same boat as I am- and all I can keep asking myself is why isn’t there Statewide. No Nationwide help for a disorder that is clearly on the rise. I constantly look for grants and at the end of the day, you can find pages of grants on how to take care of the flowers in your city. So, I keep searching and most of all I keep praying. With our little boy in our lives, Ive definately have a close and loving marriage-but I also am more closer to God. So thank you parents for posting your concerns and your thoughts. It truely helps to hear from others who are going through what I am.
Hi there my son is 16 and has been autistic since he was diagnosed at three. I had my son when I was 17years old it has been very difficult trying to work and stay off of welfare. I do however get a little respite since I live in Massachusetts and they have a very respectable system. My son attends a residential school called the Boston Higashi he has mandatory vacations adding up to two months a year. Iam very grateful to the school district and the Higashi for giving my son the funding he needs to attend this school. I could never afford my son to go there. But I do understand the lonliness for I was single for a very long time. His father and I broke shortly after he find out the diagnosis.
My child was diagnosed with autism at the age of 2. I worked with the school system for almost 10 years that claimed that they had the best special ed programs. I finally decided to do homeschooling thinking that I could improve my child’s overall verbal and social behaviors and he has come a long way in all of those areas. This was so challenging, but was very helpful. We realized how complicated language is. Some days were so swamped with so much behaviors and emotional outbursts. I tried my best to be in touch with people, inviting friends over for dinners. However, people sort of stayed away from us. Not sure why. What surprised me was that I never used to discuss anything about my child with any of them. Still… These are people that I had helped with so much educational information when they needed for their children. I do have another child who is typical and I have explored so much academic stuffs to help him out. I tried to be part of some some autistic children’s parent organizations that focused on working with the school system and brought so much value to the organization and to the community by bringing educational opportunities for parents and professionals. The new people that joined the group brought lot of fights within the group and as a result the group split up. I left the group with so much depression. Now that I thought about sending him back to highschool, I found out that there is nothing he would benefit from. I am under so much depression now. I keep writing my thoughts every day in my journal to let my feelings out. I don’t think there is anyone in the world who could understand me. I wish, some day, a door will open up for both of us that would let us enter a world where we can explore and have our freedom of expressions.
I never realised that there are websites like this and there are other people that are going through the same as i am, i thought i was alone and when daniel got his diagnosis 10 months ago i was basically left on my own didnt know what to do,who i could turn to for help,i am a totally devoted mum to 2 children daniel being the oldest at 4yrs and ben the youngest at nearly 2yrs i have never allowed anyone other than my mother or my brother to look after my kids whilst i go for a night out,i have always enjoyed putting the kids to bed and then having a good time once a week but i cant seem to do that anymore i cant switch off i dont know how to have a good time anymore i dont do my hair or even put makeup on everything is devoted to daniel and making sure daniel is alright and he has what he needs,i find myself most days sitting on the sofa crying and thinking that i cant cope then daniel comes and gives me a cuddle and tells me he loves me in his own way because he is not talking properly and then i realise what i am here for and daniel knows that i am the only person in the world who is going to be there for him and protect him from everything that life has to throw at him,there is no point in me being depressed or unhappy about what i am doing because noone said having kids was going to be easy and i have put any type of going out on hold and maybe when i am feeling better i may start and go out again but at the moment daniel gets my full attention and i think anyother mother and father out there should give themselves a big hug and tell them selves that they are doing a good job and hopefully one day we may get credit for what we do but at the moment we are on our own
take care
sally
@sally, a huge hug to you and yours—there’s a lot of us out here and altogether and with our kids I think we’ll be all right. thank you for sharing here—-thank you—-
I found out 6 weeks ago my son was autistic, after 2 yrs of preschool teachers saying something is wrong, or how about the kindergarden teacher saying he seems to simply not respect adults.
I am a strong strong woman, single, 4 kids, successful life. My 13 yr old add, that’s really nothing compared to Autism, First off I am experiencing somethings I never have. I’m lost, I’m sad, I”m confused, I have no idea where to turn first, Gluten free diet ? some dr who just wants money and hollow dreams ……. Speech therapy a must, the pediatric dr was stand offish and refused to allow me a RX for removing 4 crows that has mercury amalgom under them. so I’m paying cash. I have an IEP and am not sure what I can ask or demand from the schools, they don’t let us know our real right with this diagnosis.
Today I just felt beaten down, down right lifeless. I also read another web site with very depressed parents and them being scoulded. My son is high function and my heart pours out to those who have even more challenges, my son talks up a storm, inapproperiate off the wall things, scares other kids for being different. etc…………… God I wish everyone with Autistic a miracle, something to undo this. I hope I can keep it together, maybe prozac, maybe ? what,, who knows what will help ..If you have words for me, please write me CheriHartShow@aol.com Thank you Cheri in so. california
hi cheri. just came across your post. I am a single mom of an autistic daughter who is 14. I came online tonight looking for other single parents… i’m trying to think of a support group/network where we could literally help eachother… I am so exhausted mentally, emotionally, and financially from trying to do this all alone.. and actually, i guess compared to some others, my daughter might not seem half bad but the daily worry for her safety and future coupled with a limited support network and the daily chronic sadness has really worn me down… I’m just tired. just wondering what we could do to possibly relieve some of the burden others in the same boat. this is terrible.