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Depression in Mothers of Children with Autism - What's Your Take?

By April 30, 2007

A recent study conducted at the University of North Carolina suggests that "Mothers of children with autism may be prone to depression if they feel responsible for the cause or outcome of their child's disorder...". This morning, Dr. Dan Gottlieb of Philadelphia's NPR station WHYY commented on the study. To paraphrase, he suggested that mothers who feel they can never do enough for their child with autism are likely to suffer from depression.

Certainly, that feeling of never being good enough could lead to depression. And in some cases, individual counseling for moms could be tremendously helpful.

But upon reflection, it seemed to me that the study may be missing the obvious. For many families, even those with children at the "upper" end of the autism spectrum, there are many other significant issues that could lead, at the very least, to frustration, anger, irritability, anxiety and more. For example --

  • Parents receiving a diagnosis of autism are also coping with the loss of many of their expectations of parenthood. At the same time, they are losing out on the "parent club" that may have sustained them - everything from exchanging playdates and childcare with neighbors to coaching the local ball team. That's pretty darned depressing.
  • It can be very tough to engage in normal social activity with a child on the autism spectrum. Social isolation is known to lead to depression.
  • It can be very expensive to treat a child on the autism spectrum. Many families go into debt to support therapies that are not paid for by insurance. This can lead to anxiety, depression, and anger.
  • Often, mothers with children on the autism spectrum wind up quitting jobs they enjoy (and income they need or want) in order to care for a child on the spectrum. This could certainly lead to depression.
  • Many children with autism have a tough time sleeping, and keep their parents awake all night. Exhaustion can lead to depression.
  • Parents who have to battle the school districts and state mental health agencies for any type of appropriate services are almost certain to run into issues and circumstances which are unacceptable - but over which they have little control. This is certainly depressing.
  • As children with autism grow older, parents often face "retirement" with full personal and financial responsibility for an adult child who depends upon them for everything. This can be quite depressing.

In short, having a child with autism can, indeed, lead to depression - but the reasons are many and complex. Some can be managed by a change in attitude, but many are ultimately outside the parents' control. No matter how optimistic or upbeat a parent is, they may be unable to cheer up in the face of exhaustion, bankruptcy and isolation.

It seems to me that a lot of the issues parents face when raising a child with autism could be resolved by a combination of services that are very, very slowly becoming available in some areas. Appropriate educational services. Respite care. Group homes and appropriate, creative job training for autistic adults. Family counseling for parents and siblings of people on the autism spectrum. All of these could make the difference for parents coping with autism.

What are your thoughts on depression in mothers of children with autism?

More About Depression and Autism Parents

Comments
April 30, 2007 at 10:24 am
(1) Sandy says:

of all the therapies out there for our kids, even if they’re far and few in some area’s, not a lot is talked about in means of therapy for the parents. I had an in-home therapist for about 3 years. she was for ME, not my child and my child most times wasn’t even here while she was. parents need support too, not just from a support group of other parents, but an actual therapist who has experience with autism.

I think many disorder’s in children can cause depression, as well as many aspects of life. even still, it doesn’t mean all will experience this. on the list above, I fit most of them. change and expectations is also hard on the parent just as it is on the child with autism. I look at myself as the example for my child, and with that thought, I try to be happy and show sadness to him in a teaching manner. I don’t dwell on my loss of sleep, loss of my job, loss of some friends, loss of who I ‘thought’ my child will be, the gained ‘new’ places I had to take my child and drive to unknown locations with a meltdown being thrown in the back seat…. there wasn’t too much happiness to find around me LOL but try and look for it. you can find it. take one day at a time, don’t dwell on things out of your control (hard to do) and find a focus.
my focus is one picture when my son was about 3. we took him on the boat for the first and only time. I have a picture of that day, and the great big smile he had. at that moment, he was any child, just any boy and there wasn’t a thing wrong in the world at that moment. I look at that picture every night and often during the day. all my child wants to be is a boy, and what ever I am going through and dealing with has to be 100 times harder for him. his smile of that day is what keeps me going, his smile is that Happy that makes this day worth it.

everyone goes through depression and that’s nothing to be ashamed about. we cant forget to take care of ourselves at the same time we take care of our children.

April 30, 2007 at 6:18 pm
(2) someone's mom says:

I am a psychotherapist, the parent of a child diagnosed with PDD-NOS and susceptible to depression. I don’t know the exact impact of the autism on my own challenges with depression, as prior to that I had already had postpartum depression twice. However, I recognize myself in many of the points brought up by the author.

It is important for people to understand the difference between a diagnosis of clinical depression and so-called ‘depression’ that people use instead of calling it sadness or moodiness. Everyone does NOT go through clinical depression.

I recommend counselling for every parent whose child is diagnosed with a form of Autism, with the idea of preventing depression. Ideally, the parent would go through their sadness & mourning without succumbing to depression. In some cases of clinical depression though, medication and more psychotherapy may be indicated as well.

April 30, 2007 at 7:08 pm
(3) pb says:

I agree that ideally supports should be available for the moms of children on the spectrum – lets add to that dads, siblings, etc…….. the reality though is that many times many professionals don’t “get” what it is like to have a child on the spectrum…. I have had several friends (professionals themselves) make comments that made made me realize this. Even pediatricians who deal with children with various challenges often don’t have this knowlege base….. People working in children’s mental health / autism services often mean well but because they have not themselves faced the challenges, worries and heartbreak of a parent with a child/children on the spectrum are therefore limited in their ability to offer real support…. I agree with many of the points made in the article….. I hope that in my lifetime and that of my children that we see awareness expand to such a level that real and meaningful support is availiable to parents so that they don’t have to rely solely on others with children on the spectrum (those with struggle of their own)…..

April 30, 2007 at 11:04 pm
(4) Tina says:

I can relate to most everything the author of this article has written about. It is not only moms that suffer with sadness but dads do also. It has affected my husband as much as it affected me. We have been through lots of financial struggles through the years trying to get our son the help that he needs to achieve his potential in life. Some of the therapies that we have done with him was not covered by insurance so we had to pay out of our pockets. We have never received respite care or any services for him. We have very few family members that have helped us through the years to care for him. Mainly because they just were afraid to be responsible for his care. Our son is on the “higher end” of the autism spectrum disorder. He does not have any major behavior problems. Even still it has taken a lot of time over the years working with him to teach him academics and just everyday life things. They just learn so differently. You have to teach them so many things that most normal children would learn by watching and imitating adults. There are still things everyday that I realize he doesn’t know about, and I haven’t thought about teaching him. It is really draining emotionally, mentally, and even physically sometimes. Our whole life evolves around our son. We don’t have the freedom to just go out on a date or go away for a weekend. For us to leave without him means that we must find someone to care for him. I am thankful that we have always been involved in church. We have a wonderful church family that has always supported us with prayer. We have our relationship with Jesus that carries us through each day. We have not really had much time to get involved with support groups. Up until August 2005 before Hurricane Katrina changed our lives, my husband and I both worked full time. Since then I have had to cut my hours to part time. Our son had a lot of problems because of school and the many changes that occurred in our lives as a result of the hurricane. So I have been at home more to help him. Praise the Lord that he is improving everyday. No one can really understand what it is like to live with someone with autism unless they are living through it. Even then each one of us that live through autism have such different experiences because each autistic person is so different. We all share most of the same feelings even though we may not have the same exact experiences. Ask how you can help us, but don’t make judgements about how we handle or care for our children. Traditional methods do not work for us. We have to do things differently. Our lives are not easy, but we are doing the best that we can with the resources that are available to us. Thanks for allowing us to express our thoughts.

April 30, 2007 at 11:30 pm
(5) Siobhan says:

My son was diagnosed with PDD-NOS almost 2 years ago. Some might call our family “psychotherapy junkies”. I see a psychotherapist for myself and my husband and I go twice monthly for couples therapy in addition we see psychoanalyst trained in the DIR floortime approach for my son and our family on a weekly basis. I believe that without psychotherapy to address all the issues raised in this article, I would have spiraled into depression and my marriage would have been in shambles. I think the parents mental health should be a top priority. How can we give back to our special needs children if we are not functionng optimally ourselves. Psychotherapy allows me to let out me fears and insecurities and be able to put things in perspective and continue the rigorous treatment plan for our son. I am fortunate enough to have good insurance which covers most of our psychotherapy needs. For people who can’t afford psychotherapy, there are alot of local autism support groups. It is good to meet with people who are going through similar issues and it helps to not feel all alone in the struggles families face living with autism.

May 1, 2007 at 7:25 am
(6) sherri says:

I agree with the author as well.I have been wondering aboout this myself.With so much of what we read pionted towards our children directly affected with autism…the family is being left behind.

So called person centered planning does very little for family, so called family centered planning does little for the parents but give them more recommednations as to WHAT to do.

I find it is not so much AUTISM that has caused our “stress” after the initial shock of diagnosis…….it was the TREATMENT of parents, grandparents and FAMILY….literaly no supports,and if you can find a therapist the cost of weekly visits for each member of a family is prohibited upon everything else…even if covered by ins.Copays are to high.(When you consider costs of high quality progams/supports PARENTS must pay for themselves becuse it does not fit some mold that current supports/systems do not recognise but you could prove through video is working…improving the childs condition/impedements.(Wich feels GOOD to family)

It’s like living in america but being treated by the system like you were in a third world country….then those adds on t.v that paint such a bleak picture, false advertising about behaviorial health and how they will help you.

It IS EXHUASTING for everyone at some point during this journey.

May 1, 2007 at 12:32 pm
(7) Thomasina Carver says:

I am a mother of two autistic daughters who are both teenagers.Both are high functioning.It breaks my heart to hear from them “nobody likes me or they won’t talk to me” I feel as though I can never give them enough reassurance that they will make friends or boyfriends at some point in their life.This is so upsetting for me.

May 1, 2007 at 12:55 pm
(8) Franny says:

I find the article very insightful. I suppose by now that I am in the last category—the mother of a son now an adult whose care is my responsibility and for whom I have not been able to find proper training,support,housing, or supervision for when I am no longer here. The idea of having tried him in many programs in which he was unable to succeed leaves me with no further options. I continue to search for a “place” where he could fit in, but sadly have not found one. The resultant loss of hope for some measure of success for him has sapped me of my energy and resulted in depression.

May 1, 2007 at 2:25 pm
(9) Melanie, Bobby's mom says:

I have to admit, my first gut-reaction response to reading about the study was “DUH! Of course we’re depressed.” Like almost all moms, we are tired, stressed, financially-concerned, etc., and then we have the extra effort of coordinating our kids’ care, managing their very individual needs and then there’s the rest of the family. And that’s all on a good day ;) Throw in a Walmart meltdown and diapers on a large child, and you have a mama in need of Paxil and a vacation. I know that may sound a little flip, but today I took my 3 year old son to on a school field trip to a bowling alley, and he freaked out. Hard. I got so frustrated that I started to cry right there. What saves my sanity is a good daily preschool for my boy, and insurance coverage for Wellbutrin XL. My heart goes out to those who don’t have either. In short, the author has hit the nails on the heads.

May 1, 2007 at 9:50 pm
(10) Caryn says:

This article hit home with me…….bigtime. My 13 year old son is autistic and although I love him dearly and I wouldn’t trade him for any other child, the realities of autism take a huge toll on parents, especially moms. First you grieve, feel guilty that something you may have done caused your child’s affliction. Then you grieve some more…….in fact the grieving never really ends, you just learn to deal with it better. You then immerse yourself in finding out as much as you can about autism. Then you add on top of that constant battles with your local school district on appropriate placement, services, IEPs, while they are laying off teachers and cutting programs. To get by you cope and live day-by-day and try not worry about the future. But at some point, you start to look ahead and what it could mean to you and your child and the uncertainty and worry is debiliatating. Who will take care of my child when I am gone? What will he be capable of? And during those selfish, pity-party moments you wonder what will the rest of my life be like? Will I ever be able to retire? Will I ever be able to once again enjoy the things in life that used to give me so much pleasure?

Do moms of autistic children suffer from depression? How could they not? The key is finding the right support and doctor who become your allies.

I pray for all those moms out there who are feeling the helplessness, the stress, the worry and the absolute exhaustion. Get the help you need to better deal with all of these feelings, whether it be a support group, medication, a therapist, etc.

And God Bless all of you!

May 2, 2007 at 1:15 am
(11) Autumn says:

I really appreciate this article. This is the first time I read an article on the topic of moms and depression with children on the spectrum. In particular I like Sandy’s part when she says all the things we do not grieve.

My daughter is six with PDD NOS diagnosed only two years ago, although many things were obvious since she was two. I divorced last year and have had ups and downs in terms of mood. I agree that we use depression very liberally, but there are definitely issues that parents (grandparents, close family friends) need to talk about openly with therapists/counsellors that are not offered to us.

The whole social and medical system is so focused on the child (where it exists and is appropriate for children on the spectrum), then we as parents are so focused on our child (often very alone in searching new or alternative ways of helping), that little or no support is made available to us.

I remember going back to the doctor who diagnosed our daugther, some six months later, and asking for some support for myself. I was sent to an adult psychologist who, after 20 min, diagnosed me with a number of incomprehensible things, provided 2 sets of medication I need to take and told me to come back in 30 days. Thanks a lot!

If it wasn’t for the support of other parents I know, my ability to laugh at situations in public, my parents’ support, too, I would be quite lonely.

July 5, 2011 at 11:12 pm
(12) John Boggs says:

I hold a Masters Degree in Special Education

and in 1976, I had the opportunity to start the

Autism Program at the Anderson School in Staatsburg NY,

i worked with children whom were dealing with Autism

as well as their parents, one thing, which I really respected

the staff and the philosophy of the school, which was

to make sure Autistic kids would always be treated like

kids!” behind the unique and challenging behaviors, the

teachers and assistants would expect our kids to be

kids, wanting to feel safe, have fun, run around, laugh,

kick balls get chased shop in stores, go on hikes

go to a petting zoo, get a hug, feel loved, feel acceptance

just be kids first —- john Boggs Former Director of Ed.

May 2, 2007 at 1:48 am
(13) Grandmother says:

FINALLY! As a grandmother of an autistic 8 year old boy, not only do I worry about his future, but his parents future. Good that this dilema is being recognized. It certainly has changed my daughter and son-in-laws life & marriage and they both struggle to get through each day, week, month. They can’t take vacations because my grandson is unable to travel or stay in a hotel room. He will only stay with me for a few hours until he is ready to return home. I pray for a miracle for their homelife everyday as well as a cause and cure for autism. The parents are indeed ill too with their 24/7 lifetime job. They need help now!

May 2, 2007 at 12:36 pm
(14) Shirley says:

As the mother of twin boys who both have autism, I agree wholeheartedly with everything that has been said previously. My biggest concern is that there are very few who understand what’s been said – especially the “professionals”. Unless you’re a parent or are close to someone who is, you don’t realize that getting through the day is THE accomplishment of the day. And that if one more thing goes wrong or if there is one more tiny little crisis, let alone a big one then everything crumbles. Recently, my husband lost his job at the same time my mother, 4000 miles away, became deathly ill. I became so overwhelmed that I soon became despondent and ended up in a partial care facility for people who were pondering or who had attempted suicide. With all these groups and all these professionals, and me being there 6 hours a day 5 days a week, noone had anything for me. The leaders of the groups would get to me and say things like “well, you have so much going on, I don’t know what to say to you”. Finally they kicked me out because I did have so much going on. One son had his first music recital, my other had dental surgery. Then the school called because my other wouldn’t sit in his seat on the bus, then my other got a double ear infection, etc. They gave me one last chance to come in on a certain day and they would generously let me remain in the program. That was the day we had an appt. with a pediatric neurologist from Childrens Hosp. We had been waiting 3 months to see her because of signs of epileptic seizures in one of my sons. I told them I had to go to that appt. for my son, they sent me my papers releasing me from the program.
I guess my point is that I am glad that there is more autism awareness and more research. But I think that there is not nearly enough being done for those of us “in the trenches” as it were, every day just trying to make it through the day. There are therapies and treatments and diets, etc. But only a happy household can make those things work..

May 2, 2007 at 3:24 pm
(15) mel says:

sounds realistic to me.
At times it’s a blessing, at times it does feel depressing. With autism, there are so many unknowns, that you feel you have more control over it than you really do.It is unfair the expectations we place on ourselves.

May 6, 2007 at 10:15 pm
(16) Mare says:

being a young mom of a 23 year old autistic young man my son was more severe as a child but as he grew up and understood more he really starting to come out of his shell speaking really amazing how far he has come as a child i imagined him wearing depends as an adult as i tell you very independent dress showers shaves himself very humble peaceful passive young man i have been very blessed no one gave us a book but love and patience goes a long way now he is trying to find a lady friend no one knows what is in store for you but i always believed in my son and i really feel god provides a way and of coarse you are always worried when you leave this earth or will he or she be but all you put into your child you will see everything will be alright you have to believe in your heart and it will happen my son is living proof

May 9, 2007 at 11:37 pm
(17) Judy says:

I am amazed everyday that I have not lapsed into a total depression since we got this diagnosis. But I think I’ve been so busy with therapies, diets, doctors, and schools that I just don’t have time to BE depressed. However, I do wonder when I’ll hit a wall. I feel for everyone of the mothers here — we are all in this together, and I send a prayer out for every one of you here, that you will begin to smoothly “make it through the day,” and solutions will come. God Bless.

June 27, 2007 at 12:46 pm
(18) Kerry Weaver says:

Thank you for such a wonderful article!! I am a mom of a 17 year old autistic daughter, and am also a life coach who works with families of autistic kids, especially the moms. I find personally and professionally that moms carry more of the heart load, the doctor and therapist visit load, the deal with the school load, the trying to feed them load. Oh does my heart go out to you!! I appreciate so much the insights everyone has shared. Along with you I have had to find a new way to look at life to avoid depression. I have been successful and even found joy in the process! If any of you feel the desire to try life coaching for these issues we have talked about, write me at dreamweavers9@juno.com. I do a free session for anyone wanting to try this out and see if it is right for you. It is true what was said. Moms need a mom who is trained to help and has been there and knows the stress first hand!

July 17, 2007 at 2:13 am
(19) Carla says:

I have felt all the things mentioned in this article. I think the one thing that stands out for me more than my son being autistic is how family and friends have reacted to him. I feel like saying you can’t catch autism. My faith helps me. I know that there is a place in the next life where the “bad” parts of autism will not exist.

July 23, 2007 at 11:46 am
(20) Michele says:

As a SAHM to 2 girls, the younger being autistic, I have felt the same way many of you have. Reading this article and your comments have cemented my feelings that I am not alone and what I am feeling is “normal” under the circumstances. I know that without having gotten help for myself (therapy and prozac) I wouldn’t be able endure all the ridiculous hurdles a mother of an autistic child faces. Not only is it difficult to deal with the situation with my daughter but having to face the ineptitude of society and the medical community regarding Autism is like being kicked while you are down. However, by making sure I take care of myself as well as my family, we will prevail.

August 25, 2007 at 3:54 am
(21) Ruth Mozeika says:

I feel like some have expressed. I could not love my child more,but getting the help for myself is the hardest thing and doing it…I could not love my child more than any other child, I try to focus on the fact that we have issues just like everyone, just different issues. But I have to find the “right” kind of support. I like to write poetry and that has been a god send. I have published a book and am working on another one, (poetry) and that has helped. I tend to obsess about school issues and that steals the joy out of things. I have to find an appropriate outlet. -Ruth

September 22, 2007 at 9:33 am
(22) San says:

I’m a psych RN. I have a new patient who has a daughter diagnosed with autism last year. She is overwhelmed, depressed, and suicidal. Tries to always smile and make everything ok, and she’s a “pleaser.” She thinks she’s all alone, husband’s not real supportive. I’m super worried about her. You guys are right. There’s no real help unless you’re either rich or have some kind of insurance I’ve never seen. What I wanted to ask is, is there any group that specifically is for mom’s with autistic daughters? She needs to talk with somebody who has been thru this. She says she only meets mom’s with autistic boys. This site has really been helpful for me to hopefully help her, and I really hope the hospital keeps her long enough to do her some good. I think if she leaves too soon, I’ll be reading her obituary, she’s that depressed.

October 14, 2007 at 11:55 pm
(23) Carol says:

WOW! Maybe I am entitiled to be depressed after all! I sometimes feel guilty for being so depression over my son with autism because in the materials things of life I have been so blessed. The hardest part for me is socially. So many of my friends are still after 7 years not even close to getting it. They want me to do “normal” things when I’m around with my son, but normal is just not possible. Their children still act as if he just arrived from Mars. So many of you are right, therapy for parents just if not available – either financially or not being able to find a professional who understands life with a child with autism- the present and the worry of what the future holds!

October 22, 2007 at 2:28 am
(24) Ahmed Qari says:

I agree with this study , from what i face having an autstic child and he is alomst 6 years . i felt responsible for him many times being autstic . and it made sick and made me go the shrink many times . the same thing happned to his mom she is still suffering from a complex thinking that if i knew i will have an autstic child i’ve never thought of having baby . but any ways being father or mother of an austic child is big responsbilty to handle .

November 9, 2007 at 5:05 pm
(25) Mary Halvorson says:

I have been reading a book “Signs of Autism in Infants” and there is a chapter that talks about the mother being depressed and how the infant would turn away from their face because of the worry or anxiety in the mother’s face. The infant would also not respond to the mom’s voice and when measure against another mother’s voice saw that the depressed mother’s voice lacked the “parentese” sounds that infants tend to react to. It also said that once mom was on anti-depressants that the infant responded much better and became more engaged with the mom. It was interesting to read about.

November 18, 2007 at 8:09 pm
(26) Cindy says:

I have a 12 year old with PDD-NOS.
I agree with the isolation. The worry and anxiety is a daily routine. However, I am blessed with a wonderful school district. Respite is golden and keeps me going.

November 20, 2007 at 10:13 am
(27) Lynn Morgan Rosser says:

Thank you so much for this article and thank you also to everyone who has commented about their own experience. I have a five year old boy with autism and a 2 year old with a major congenital heart defect that required three open heart surgeries. I am finally at the point where I have to seek help for myself. It’s a tough thing to admit- I want to be the ‘together mom’ who can handle it all with grace, but the endurance factor of having an ongoing chronic situation with my eldest son, coupled with the mangement of my littlest guy’s condition is just too much to bear alone. My husband and I are hanging in there and we actually have support from state agencies and a school system with a special autism classroom. I feel blessed to have as much support as we do, and so I get angry at myself for not being able to be consistantly heroic, or something like that. The internal pressure to save both of my sons is constant and my desire to keep everything running smoothly is thwarted on a very regular basis. I always feel like I need to do MORE – work more, research more, do more interventions, pray more, connect to others more, etc. I appreciated someone saying how if there is just one more thing, one more crisis, that it could push them over the edge. My son with autism just had a regression and a medicine change that has created ongoing behavior difficulties including biting, hitting, major tantrums, backsliding on hard-earned semi-potty training, constant obsessions with food and stimming, fears of entering buildings, whole-body resistance to doing anything he does not want to do, constant motion and ‘bouncing’ around, etc. He is still non-verbal but the one thing he can do now that he’s held on to is pointing at pictures for things he wants. It’s a huge accomplishment and I try to hang onto that with both hands as something to give me hope that we will get through the constant crisis of autism – that it will get better. I found myself having moments where I would say something offensive by accident, as if the internal pressure cooker had to release some steam or explode. It was embarassing and, of course, damaging to others, which leads to guilt and more depression. I too write poetry and have put together a little book about going through both my sons’ challenges over the last three years. It was very theraputic, but not enough. I walked a marathon and a half for the Avon Breast Cancer charity but it wasn’t enough to get the anger out of my body. I love my sons with all my heart and will continue step up to the plate, but now I know that part of that ‘stepping up’ is taking regular care of my own psyche. I hope that everyone out there who KNOWS what it is like will find the help they need for themselves and their children. Blessings – Lynn Morgan Rosser

November 27, 2007 at 2:53 pm
(28) Lela, Bowie, Maryland says:

I’m mother of a 27 year daughter who is autistic. Of course when she was diagnosed there was nobody else with this “illness” an virtually no treatment. We had really good insurance, just not good mental health personnel. You were expected to just handle everything yourself or hide your child in a back room. I got no support from doctors, teachers, or school districts. Mainly because my daughter is was not a behavior problem and actually did well in school despite having virtually no oral communications skills or definitely no social skills. She excelled in Math and spanish and that was good enough for everyone thereforeshe was deemed not requiring special accomodations.
Everything on the the social level was missing. I am so very depressed. Thanksgiving was so depressing when my son “tore” into my daughter stating that she could do better–I want her to do better, but I know there’s no hope. Her social anxiety is just too great. There are moments when I am unable to bear seeing her being so isolated and such a lifeless blob and I’ve attempted suicide–the pain was just too much. Now I’m seeing how badly it is affecting my son and his life and something got to give. There are just too many lives that are not reaching their maturity.

December 2, 2007 at 11:48 pm
(29) Teresa says:

I believe this is true for me anyway. I feel at blame for what is going on with my son. There is no help out there for parents with children with autism. I have severe anxiety and depression that I can not get any help for. That is because I am still battling with the system concerning my son

December 8, 2007 at 5:30 pm
(30) Ruth Mozeika says:

You need support and someone to talk too. We had a tough Thanksgiving too. I think at Christmas we’re going to send out invitations for people to come here. You have to remember to take care of you!! I really felt alot of frustration at Thanksgiving and finally recognized that maybe staying home is better. The families in my area don’t find alot of support from health and human services, but mostly from each other, so we don’t feel alone and you are not alone!! I am looking into Meals on Wheels to see if they can help in any way, they do serve people with disabilities which I did no know. Holidays are rough…Do you find any agencies or support at all in your area? Please let me know how you are doing…Ruth Mozeika

January 21, 2008 at 12:53 pm
(31) Donna says:

I am encouraged that depression in mothers of a child or children of autism is being looked at. As a mother of 13 year old twin daughters with autism how could I not have depression. My love for them is unmeasurable and I would not change having them but the grief that I feel everyday even after I have known for 11 years now of the diagnosis. Autism affects every part of my life, it affects my relationships with my other children, my husband, my family. It affects where I go , who I get to know and so on. I really do not want to limit my expectations for my beautiful girls but reality is always knocking at the door. My heart always hurts for them as they are identical twins and have very different and severe issues. And when I start thinking about their futures, who will help to care for their 24 hour needs, who will help to keep them safe, where will they go? Well, lets just say at this point in time that reality speaks loudly at my door. Anything that puts knowledge out there like a depression study is encouraging for the outcome for all of us.

February 7, 2008 at 3:11 am
(32) julia says:

I can’t get any help. I am on my own with my 6 years old Autistic daughter. And I know if I make it to next year I will end up in mental clinic. I am leaving in hell.

March 22, 2008 at 10:57 pm
(33) Dianna says:

I am glad to come across this article. I’ve devoted all of my resources to my son and been very lucky that biomedical interventions have worked. We struggle with ADD/ODD but it’s not so hard as autism. I know we are lucky but I feel devastated by the whole mess. And now my darling girl is heading for ADD dx as well. I think I hit that “wall” someone else referred to and all the adrenaline over years came to a halt and I had to stop. I think I had PTSD from all the screaming and agression. I took some time off but now have to get back on it and it’s like eating something that makes you sick. I’ll have to work at an easier pace. I’m glad to see something for the moms. It’s hard work we do.

March 26, 2008 at 8:29 am
(34) J Shelton says:

DEPRESSION is a real disease that affects too many people. The relity is we all need to stop being so self absorbed and start cacring about our neighbors again. Cooking an extra meal, volunteering to sit with people and listen, really listen to their issues, praying with each other, asking how you can help and mean it. When everybody does a little no body has to do a lot and the world will be a better place.
BLESSINGS

April 8, 2008 at 3:16 am
(35) Maria says:

Thank you for a wonderful article that hit the bulls-eye for me and for all the heartfelt responses from the moms who truly know what it’s like. I have a teenage daughter with autism and I think I’ve finally hit the wall because I am saying “no” more often and trying to figure out what I need to be ok in this life. I think we can all use an activity/hobby/interest and people in our lives that have nothing to do with autism but remind us of who we were before. And I could really use another mom with a similar autistic daughter as a friend.

May 13, 2008 at 10:19 pm
(36) Mom says:

As the primary caregiver to my 8 year old ASD adopted son, I have been depressed for years. It’s like living under siege. I try to find ways to bear the tantrums, and chaos that is a part of our daily live. Try to give my NT child normal experiences but it’s hard.
Autism sucks. I’m depressed.

May 14, 2008 at 4:51 am
(37) d lee says:

Hello

Thank you for such a heartfelt and accurate article.
Yes it can be very isolating being the parents of a child with an autistic spectrum disorder, and don’t forget it not just the mothers who have to cope with the isolation, depression and financial problems. the fathers have equally a lot of the same issues to deal with.

June 24, 2008 at 10:39 am
(38) Donna says:

Thank you so much for having this forum for us Parents to discuss our lives of having a autistic child. My Son is 19 years old. He is a wonderful young Man. He laughs, cries, has feelings, but again, he is autistic still. He does not understand the concept of time, he refuses to bath every day, he wets himself daily, and refuses to go anywhere for days on end. I have been a single Mom now for the past 14 years. I also have another Son, who is 15 years old, he does not have autistm. Our life has had the ups and downs of autism through out. For the past year, it has been diffucult because my autistic Son refuses to do so much. I understand him alot, so I don’t usually get that upset, but I am seriosly considering a group home or adult foster care part-time for him, as I am thinking of preparing him now will I am here to get adjusted to not being so dependant on me. I do have legal guardship of him, so I would still have the say so over decisions for him the rest of his life. I really think that he now needs more, and deserves to have more then just me to depend on. Since I am only 41 years old, I will be here for quite awhile to support him in his new environment.
Has anyone else had to put their adult child in foster or group home care? How has it gone for your child?

Love to hear from anybody with input.

Thanks a Bunch,

Donna

July 27, 2008 at 7:25 pm
(39) emeryfollowlights says:

Although I am only a 17 year old girl, I study Autism a lot because I know in my heart that I want to be a teacher for children with this disorder when I grow up. I may not have a child with it, I can see the strain it does put on the parents. I can’t wait to become a teacher.

July 31, 2008 at 4:06 pm
(40) Kellie says:

Who cares for the caregivers? No one. I have a 9 year old son with ASD and 2 neurotypical children. Balancing the needs of all 3 is like living a high wire act. Sometimes I feel like I am watching others with their kids through a pane of glass and I am stuck on the autistic side. Depression? Heck yes- every day!!

August 30, 2008 at 5:19 pm
(41) Steve says:

Hi,

I’m a Dad, and even I’m depressed. Today we went to the zoo and my 4.5 year old son spazzed out twice, all because a worker cleaned the table off we were going to eat it. He banged his head once on the pavement hard, kicked, hit, put dirt in his mouth and hands…it was one of the most embarrassing things I’ve ever been through. It seems all the time and money we’ve put into helping him isn’t helping as much as I would like or my wife would…it is depressing.

September 29, 2008 at 1:54 am
(42) Suzanne says:

I have 4 children on the spectrum. Yes, 4. During the 7th month of my 4th pregnancy my oldest 2 were diagnosed. 8 months after her birth my 3rd child was diagnosed. They are all affected differently and are at different levels. Am I depressed? Oh yeah. It comes and goes. Just when I feel like I have it under control something triggers it all right back. I have weeks and months that I don’t feel depressed. Sad, disappointment and often irritation stays with me but not depression. Unfortunately I have hit another bought. My childen are 9, 8, 7, and 6. They are all in school full day and this should help me. Yet there are days(most days) that once I put them on the bus I go straight back to bed. 3:00 hits and I have to scramble out of bed to put on clothes and meet the bus in front of the house. My husband comes from a family of eight kids and half of them are married having children as well. The thought that 20 years from now they will all be having grandchildren is very hard to handle. We both feel very alone. My husbband and I love our children dearly. How can this situation not push someone into depression. Watching other children make fun of or leave my kids out is heartbreaking. Imagine how my kids feel. It is time that services become available for the parents. Depression is not something you fool around with. How can mothers and fathers give the best possible care to our children if we are constantly bogged down by depression? Thank you for this article and getting this message out.

February 5, 2009 at 5:58 pm
(43) mandy lou says:

I have a son 9 with severe autism and a nt daughter. My son has been getting worse with tantrums at least one an hour and has started hitting me and squeezing me im only 4t 10 and hes getting bigger ,my hubbie works away alot im just so emotionally tired and stressed getting through a day without feeling the tears is a struggle at the mo, i want him to go into residental school but our authority no chance to get funding unless he was kicked out of school! im wondering if this risperone hes been on for 12 months is making him worse? ive tried giving him aloe vera thi s week but hes had a skin rash . Any help on the ripserdone meds much apprieciated xx

May 26, 2009 at 2:17 pm
(44) eric johnsonRPA says:

MandyLou,
Yes, repidol also causes episodes of hysteria ,rashes and crying spells inthe kids ob this med I have a 31yo son who was on the med when he was in his late teens. Keep personalrecords of bad behaviors and meds. Drs
are looking in the book and mak assumptions about what the meds should do,not all the bad outcomes are listed ,see if lowering the amount and times given improves things.blessings,eric, amedical professional & parent of asd child

June 1, 2009 at 9:34 am
(45) Louise says:

We have four kids, two of whom are blind and have autism, aged six and three. The six year old has highly challenging behaviours from faecal smearing to other awful behaviours. I’ts incredibly difficult to function on three hrs sleep a night and still try to keep strong for the other children. The three year old is a twin (girl twin is fine) but he is completely non verbal, shrieks and screams (happily) the entire day. I haven’t spent time alone with my husband in years, have no family who support us and sometimes I feel like I am completely isolated. It’s lonely and depressing and frustrating. There are moments when the sun shines through and I see how much of a positive, character building experience this has been, how much it has strengthened our marriage (although I know we are a minority in that respect) but it seems that the sunshine is depleting rapidly as they get older and life gets more difficult. I dread tomorrow. I never know what tomorrow brings. I miss the joy, the peace and the small things in life that all my friends take for granted…. I wish you all much love and strength on this journey.

July 8, 2009 at 3:30 pm
(46) Kim says:

After reading the article and the comments …. all I have left to say is – at least i know I am not alone in this. As a “30-something” mom of an autistic child who also has a speech disorder …. I am tired. I have a ‘typical’ child as well. I guess one could also say I’m also ‘depressed’ but I’m not quite sure what it’s called, but I know I am worn out all over. Sometimes I feel okay, sometimes I feel a lot worse and just want to stop trying – but “things” never take a break. I see my life and my family’s life reflected in all the comments here – kudos to those of you who found good supports. For everyone who is still searching for someone who will listen and understand, for family who will accept you and understand, and will HELP and support you, for an environment that will be “okay” long enough for you to catch your breath and rest for a moment …. I’m in the same struggle. Wish I had time to find a therapist I could trust, wish I could find an agency I trusted for my child. So far, none have worked out – they all treat us like “replaceable parts,” moving therapists and TSS around like Lego pieces. The insurance companies and government agencies are just as bad with their forms and categories …. it seems the schools are like that also. I wish it didn’t have to be so block-like, but the systems seem designed that way ….

August 8, 2009 at 4:19 pm
(47) claire says:

im from england as there is not much help here for mums after their child has been diagnosed with ASD , my son is five and im a single parent i also have a teenage son who does not have ASD, every day something happens to make me feel bad and isolated about this situation, mainly by other peoples ignorance! i wish there was free councelling where i live so i could off load my worries and feelings of depression!!

August 26, 2009 at 8:08 pm
(48) Mom of PDDNOS says:

I found this article by googling, “PDD-NOS depression and mom.” I was crying while reading the article. My son was diagnosed last week with PDD NOS. In some ways it was a blessing to have a name for something we already knew. He has been the biggest challenge of my life. So many ways our lives have been changed, but the social aspect is definitely hard. We’ve really only been able to socialize with certain families and kids because a lot of people don’t know how to take him or provide hurtful advice. I feel like people look at him and think I’m a poor parent and I constantly feel like a failure. When you talked about therapy/medication for mom the hard part is we’re already spending so much time and money on his needs that I feel quilty taking any more time or money from the family. I’m glad to read others’ comments who are experiencing the same emotions as I am!

September 23, 2009 at 10:08 pm
(49) keodora says:

all the stuff mentioned in the article and the comments i am going through it and have been through it. but my biggest issue now is the fact that i can’t work because i have to care for my son full time. how am i suppose to live? even though there are states that pay parents that care for their mentally and physically disabled children not all states do it and they should. and unfortunetly my state nj doesnt have the service and if they do i know nothing about it which is typical with all services in a lot of states. but i hope this will change soon and i have spoken to people and written a letter.

September 23, 2009 at 10:21 pm
(50) keodora says:

all the stuff mentioned in this article and in the comments i have been through and still going through but i want to say its the financial part now that really has me stressed depressed and everything else. there are some single moms who cant work because they have to care for their disabled adult children like myself. thing is how do we take care of ourselves when we have no income because we cant work? i know that there are programs that pay parents who care for their disabled adult children but its not in every state including nj.

September 30, 2009 at 9:40 am
(51) piggie says:

I am crying as I read this article & comments. This has just sapped the joy from my life. The daily therapies, a non verbal 3 yr old who has a screaming meltdown at the church festival- which should be a happy outing, the embarrassment of him jumping on the neighbor’s furniture when we went to visit. I wasn’t happy to find out I was unexpectedly pg at age 43, but accepted it. I didn’t know I would be dealing with a child with significant cognitive & verbal delays. The worst part is that I am not giving my normal older twin boys the attention & patience I used to give them, because I am so wrapped up with DS #3.

November 17, 2009 at 8:44 pm
(52) Mrs. Ditka says:

I have so much to say, I’m not sure where to begin. I have been projecting my emotions on anything and everything(mostly Kate Gossling). This hopefully is the appropriate place.
I’ve been raised not to complain. When I do complain to my well meaning family, they respond with love and tell me they understand what I’m going through or to try harder or try a different way. My husband says stop doing this or start doing this and runs off to work for 12 hours a day. We are broke any way and my husband blames me for this. He thinks I have immature spending habits , when in reality my spending is often a result of desperation. For example, he gives me a hard time for buying on demand movies. Sometimes an on demand movie could save the day or a few hours. Why don’t people get this? Everyone has opinions or advice for me, eat better , exercise more , get off medicine. In another life I would love to follow this advice. I swear to God , if I could I would. I am too occupied with my two special needs children to take of myself. They are the raw facts. I think I’m doing the right thing, but I’ve neglected my self so much, I cracked. Now I’m no good to anyone, totally depressed, and cornered. I am tapped ! Strength and will have gone out the window. I do still have hope and am grateful for a husband who puts up with all of this. Anyway, I could use some prayers and maybe a miracle . Like Jerry Garcia said”I need a miracle everyday.”

January 5, 2010 at 7:19 pm
(53) Pittsburgh Mom says:

I am still being treated with antidepressants 12 years after my son “disappeared” into autism. I have to keep my life very structured, especially any time that I spend alone, or I will just sleep all the time. This is because it hurts to be conscious in a world where a wonderful, affectionate, talking, laughing little boy could suddenly shut down and leave us with nothing behind but the empty shell of his body. There are still things I enjoy doing and in a way, I can be a sort of escapist happiness while I do them. However, I can’t ever feel happy in a normal, unplanned way. I feel like I lived and my son died and no mother wants to outlive her child.

January 24, 2010 at 7:38 pm
(54) J says:

I’m really not sure what to write other than I have been in denial of my son’s autism for sometime. We are in the middle of getting him evaluated and I get physically ill when another therapist/doctor comes to see him. I really don’t know how we’re going to get through this. I have had concerns for a while, but it was just easier to deny. I teach students w/ special needs have for ten years, but it’s different when it’s your child.

January 25, 2010 at 10:14 am
(55) Linda says:

I am a friend of a mother who has an autistic child. He is going to be 10 this year. I worry about her all the time. Her doctor has given her what I call a “depression cocktail” and that scares me to death. She has talked about suicide before. WHAT CAN I DO TO BE MORE HELP?!

Thanks,
A friend who wants to help…

February 13, 2010 at 5:18 pm
(56) LISA CHEEK says:

I think the world should recognize that along with all the problems that have been discussed such as expensive therapies, financial burden, no respite, exhaustion, isolation etc. Hello people, there is no sitting down. There is no shutting your brain down, even when your child is in school. YOU NEED TO BE REALISTIC AND REALIZE THEIR IS A FUTURE AND WHERE WILL YOUR CHILD BE. THE YEARS GO FAST. SO GET WITH THE PROGRAM AND QUIT YOUR JOBS AND START TEACHING THEM LIFE SKILLS EVERYDAY ALL DAY. THE INSURANCE COMPANIES SCHOOLS AND STATE ARE NOT DOING IT. YOU HAVE TOO. IF NOT YOUR CHILD WILL NOT BE A FUNCTIONING ADULT IN SOCIETY AND YOUR NOT LIVING FOREVER. ITS PATHETIC THAT THEIR IS NOT MORE IMMEDITATE HELP ON THIS ILLNESS. IF THESE CHILDREN WERE DIABETIC INSURANCE WOULD COVER IT ALL. THANK YOU GOVERMENT YOUR LACK OF CONCERN ON THIS ISSUE. PARENTS OF AUTISTIC CHILDREN DONT LIVE THEY EXIST. THEY LIVE IN A SEPARATE WORLD FROM SOCIETY.

February 17, 2010 at 2:14 am
(57) Sandra says:

Since starting this journey, I feel I have been on a roller coaster ride from **ll. There are great highs when you child has a breakthrough and such lows when regressions hit. What I find so disheartening is getting lectured by family members about *taking time for myself* with no real offer of assistance to make this happen. In this case, I mean financial assistance and respite care. My husband’s family is quick to offer financial support then withdraw it when she hears the price of a round of therapies. We’ve decided the HELOC track is better for us versus the drama of people who appeared concerned but not enough to commit to anything.

April 27, 2010 at 4:00 am
(58) Jordan James says:

i am a single father and the primary carer of both of my children one of who is autisic. and this evening i was really not feeling the best. about life and his future, amoungst other things. so i have never done this before but i got online to have a read and a look for other parents in a similar situation but just as with real life its all about mothers and there kids never fathers and there kids. The irony is that often you hear women complain that men dont do enough with their kids but if a man does the job you get isolated out of support and chat. SEXISM IS ALIVE AND WELL BOTH MEN AND WOMENS ATTITUDEWS REALLY DISCUST ME AS TIMES.

May 25, 2010 at 4:04 pm
(59) lara says:

Yeh, got all of those symptoms. The best bit of advice someone once gave to me about caring for my autistic child was that I couldn’t cure him, but had to try to do my best for him without destroying myself through grief, despair which can lead to self destruction. Also I was surprised by this adviser person saying I must protect my marriage. This should be obvious to folks but is so often neglected by us parents concentrating on the autistic child’s needs.

It is really important to have time off to maintain sanity.

( I was at my lowest caring for an elderly mother with dementia and a 5 yr old with autism) This is not my life I would tell myself.

Nobody ever said it was going to be easy so I have decided to give up being bothered if people don’t understand how stressful my life is. Who cares what they think anyway they know diddly.

June 20, 2010 at 6:20 am
(60) Stu says:

Don’t forget fathers too. Sometimes we get forgotten about in the statistics, the family and article headlines.

July 31, 2010 at 12:54 pm
(61) Jenn says:

I was 36 when I had twins. For about 15 years prior to their birth I had been diagnosed with Borderline Personality Disorder, Bipolar Disorder, and Major Clinical Depression. Because of the labels that have already been applied to me,
I must remain ever vigilant not to allow the implications of them to interfere with the development of my autistic 3 Year-old boys . If do not get help for myself, I cannot succeed. And they will suffer. I have a support system in my parents, who have assured me i need not make excuses as to why i need to drop them off for an afternoon to just wander about in peace….to grab some me time. I am also the primary financial provider for our family of four. There is alot to be anxious about. I am not capable of handling this alone, and it’s ok to admit that. Good luck to all of you in similiar situations. Don’t forget to respect your sense of self and protect it. I have found it helpful to admit my needs and release myself from the guilt of failing to be superwoman.

August 1, 2010 at 9:18 am
(62) Louann says:

My autistic son turned 18 in January. Except for when he was diagnosed (at age 2) this has been the most depressed I’ve been. I guess I thought all the advocating, getting the right program, right neurologist, education specialist would somehow make him “not” autustic someday. There were years when autism wasn’t defining me, but they are gone as I try to find his “niche” in this world.

August 18, 2010 at 11:22 pm
(63) Yon says:

I’m a father of an autistic son. Most of the responsibility has fallen onto me since my son’s mother has had a difficult time accepting our son’s condition. It’s gotten better over the past 18 months with my wife finally starting to lend a helping hand, but I’m near the breaking point …. maybe I’ve gone too far already. I feel like I’m in a fog all of the time. The lack of sleep is the worst. For you moms out there doing it all alone – you’re my hero!!!!

August 23, 2010 at 6:49 pm
(64) Shanna says:

I have an 11 year old daughter who was diagonised with PDD-NOS or Autism Spectrum disorder when she was 6 years old. I was 22 years old when I had her and my husband was career navy at the time. I found out that just with in her life time alone, that there is no medical testing to diagnose autism. Diagnoses are either psychological or neurological. I was very fortunate to have the support of a great school and friends who loved and supported my daughter. I find that I challenge my daughter… I don’t let her settle and I cater to behaviors. I know that there is some levels of autism that are more than extreme than others. I have had times of depression and I often do worry about my daughter’s future. She sufferes with OCD, ADHD, and developmental delays. She also has delays in pragmatic speech. Homework is a battle every night. What takes a the average kid an hour to do the homework each night, it takes her 3 to 4 hours. I found that the kids in her class have rallied around her and have taken her under her wing. She is very social and wants to interact with the other children. However, she finds it hard to develop interpersonal relationships.

In the beginning when I first started to become aware of her condition, I had a hard time accepting it. Once I found a good therapist who could explain the issues with my daughter, I was able to lower my expectations, which had led to my frustration and depression. Once that happened, then I could focus on her strengths and help her with her weaknesses. This child is a blessing to me. I would not trade her for the worlf

September 26, 2010 at 1:46 pm
(65) Mona says:

Even more than the article, the parent comments really hit home. If everyone who knows an autistic child would take the time to read these comments, I think that the world would be better place for families of autistic children.

Our kid is now 9 and a half and our story is much of the same as above. I think that Kelli said the short of it and the long of it is living it everyday. For those with a supportive family, you are really lucky. For the rest of us, we just can try to survive day to day.

October 31, 2010 at 8:37 pm
(66) Liz says:

My son was diagnosed with PDD-NOS 5 years ago, and the stages of grief evolve and repeat themselves. There have been frustrating times and wonderful, celebratory, hopeful times. Now, with my son just turned 8, and me in the teeth of perimenopause, I fear I am sinking into a full-blown depression. I feel like giving up because it is never over, and my son is never truly at ease and happy. But I can’t give up, none of us can, so we get a good night’s sleep and wake up to start again.

November 12, 2010 at 8:59 am
(67) Rebecca schieffer says:

This article was 100 percent right on. No one seems to get it and those on the “higher end” of the spectrum don’t get it either. Oh how I wish I could complain of difficulty teaching my son to read or do homework-hah! I would be happy if he could say “mom” or tell me if he is sick or hurt. Do you get how utterly painful it is to constantly try to guess why your child is crying and you can’t figure out why? Social isolation? Former friends have disappeared. I want to puke every time I have to take him to a store or public outing not knowing how he will behave and guess how many adults and children stare at him as if he were a freak! They don’t know what it’s like to be bitten so hard by your frustrated child that you have bruises and sore for days. I don’t cry from the pain but cry when I think of coworkers who go threw their life week after week talking of bullshit and what they did on their weekend. Know what I did? I was up with my child from 2am on-he never did go back to sleep (insomnia), bawled from 4am on thinking of how I haven’t had night of sleep in 8 years, and recleaned up his latest mess made in the house. I feel as if my other two children without autism have to raise themselves. Spouse support? Yeah, he says a lot of the right things to help but dosent actually do anything to help unless watching hours of tv is somehow pulling his end of the load. The only real help has been my mother and she’s getting older. Without her, the best thing left for me and my son would be to do die together peacefully but then who would take care of the other two children? I don’t even have the option of ending everything anymore. That itself is most depressing.

November 19, 2010 at 4:37 am
(68) MM says:

I think my five year old is undiagnosed Asperger’s/high-functioning autism. I have been in denial about it for years, but all his little quirks (his pickiness about his clothing, his at times unceasing and confusing conversations, the melt-downs, his obsession with computer games, his lack of enjoyment in many surprises I’ve planned for him, etc.) and the problems he’s having with kindergarten (being forced to color, practice his handwriting, do things on a quick, rigid schedule) are really bringing home to me the fact that I need to get this child evaluated. I just thought that if I treated him like he was normal, he would learn on his own and at a young age to cope with a world that does not make disability easy for the disabled. I think of him now and I feel so hopeless. Like I’ve failed him. Like there’s something in him that is hurt because he knows he’s different. I want him to be successful in school. He’s a very smart child, but I don’t think his teacher is aware of it. So now I’m getting help. Just worried about him becoming his label. But it’s either that or problem child.

November 22, 2010 at 6:11 pm
(69) j says:

Very often I return to this site to help me put things into perspective; to help me remember I am not alone, even though I feel like I am. Sometimes I am just so positive and my son show such great progress, but then days like this creep in and it just destroys me. I wish could just take it away and make it better for my son. I wish I could just have him back the way he was before Autism stole him away from me! I just miss being happy and looking forward to the future!

December 6, 2010 at 11:05 pm
(70) Tracey says:

OMG im not alone. Before reading this article and comments, I felt like i was in a state of constant falling just waiting to hit the ground. I have a high functioning 8 yr old autistic daughter and a “normal” 2 yr old daughter. At times its like having 2 babies.I felt her whole life that it was my fault that she was like “this”. My husband is not an emotional person and my daughter has constant bouts of sadness and crying spells that last all day. She has a language delay and is unable to ever tell me why she is sad or angry. It is soo painful being her only friend.She trys to play with other kids but they treat her like she is not in the room or like the village idiot. I wouldnt trade her for the world but lately I didnt know why I couldnt smile. Depression, WOW. knowing im not alone, makes today a little easier to bear. I feel like i have to do it all. I have to love her provide for her dicipline her and be her friend all while maintaing a career,being mom to our other child and a wife to my husband. I am NOT superwomen.. Prozac hear i come…

December 28, 2010 at 12:17 am
(71) Sandy says:

I have a 19 year old son who is asperger/spectrum disorder diagnosed. He has stolen from us. This past time, he stole approximately $1000.00. We decided that we could not have him in our home anymore, because of the problems that he was continuing to cause. We counseled with our pastor and he recommended a motel room until we were able to find a place for him. We contacted MHMR and of course he was too high functioning to qualify for a group home. We were able to find an apartment for handicap, special needs and low income elderly. He is going to be moving in soon. He suffers from sleep disorders, refuses to talk to us very much, and as most asperger adults, has poor hygiene issues. We check on him daily, provide food, and try to converse with him. He finds enjoyment in watching Anima (sp) cartoons, playing video games, and watching the history channel. He has changed a great deal since he has become an adult. He is harder to control and is very argumentive. He now refuses to take his medication, but argues that he does take it. I am really glad to know that there are others that understand my depression, guilt, and sadness. His dad is grieving also. We have raised him for all of his life and had to make a hard decision. I just pray that this is the correct decision. Who really knows the answer??? I ask God daily to please intervene and help us. Thanks for listening and for sharing.

January 3, 2011 at 5:40 pm
(72) Elena's Mom says:

Thank you all. This lets me know it’s normal to feel so depressed. I used to never feel sad. Today, I mostly kept my office door closed so I could cry. All while a coworker is frantically calling numerous businesses to find who can sew a patch onto her husband’s bagpiping outfit. And another printing lasagna recipes. I feel so sad for my beautiful baby.

January 6, 2011 at 8:00 pm
(73) Barbara Howard says:

I can relate too, a lot of the comments that was left behind!

I’m a mom of a set of,25 yrs old autism twins daughters
The blessing is that their dad involvement is 500%
of their well being
Even with the other parent support, it’s still a heavy
burden.
At times I truly,( feel like can this be real)! what their Dad
and I go Thur from day to day..
Support, programs that actually work.etc.
Right now things are going rough for us.
One of the twin been in and out psychiatric hospital.
I like to start some kind of outlet for people, to go who
pretty much live this kind of life.
Just to be able to unwind, share information, AND FIND
THE TIME TO HAVE A GREAT BIG HEART FELT LAUGH!
And to be so thankful and bless, That we can try to do
something about it. and it will be a rocky road…
from a mom
Who is very tire,
For right now.

January 19, 2011 at 12:23 am
(74) Rebecca says:

I don’t even know how to get started. My 2.5 year old son just got diagnosed two months ago. Immediately, I sprung into action, reading articles, researching every topic, etc, and getting him started with early intervention and other therapies available. I had work to at least get me out of the house and give me some breathing room, something else to focus on other than watching my baby boy regress and stim his way through the day. Then, I broke my leg a month ago, and I’m home all day, pretty much immobile and unable to literally and emotionally reach out to my child when he fades out.

I feel so helpless. I’m trying to get back on my proactive horse, but I’m starting to drown in my anger and sadness. He’s a sweet and happy kid, but he’s in his own sometimes unpenetrable world. I wish I could understand what makes him laugh, what gets him excited, sad, frustrated…but he’s such a mystery at times. My husband is wonderful with him, but my emotions and the strain of our new normal paired with the uncertainty of our son’s future has taken its toll on our relationship. I worry about our marriage losing intimacy, being the parent our son deserves to get him through this life, our already day-to-day financial crisis and how I can get up in the morning everyday to face myself in the mirror.

I know its time to talk to someone. I feel so isolated right now. Thanks to all the parents and caregivers who posted on this thread. It’s allowed me to start sharing and feel validation for my fears and grief.

August 25, 2011 at 2:43 am
(75) Charles' Mommie says:

My son is 3 1/2 and has pdd nos. I go through a range of emotions about this diagnosis, beside being exhausted, my husband is never home, works out of state, even though my charles is my one and only i am with him 24/7, i get a break an hour a week, it’s exhausting. I lay at night thinking of his future, will he ever be independent? what will happen to him if I die? I an only child and don’t have much of a family. To say that I am depressed, overwhelmed, and in need of support is the an understatement, I just deal with it, try to live day by day and do my best not to let my negative and natural emotions get in the way of my enjoyment of my charles. It’s so hard sometimes when he gets fixated on certain things and that’s all he wants to see and talk about…I Pray to God he gets better as he gets older, I pray hard he’ll be independent and be able to care for himself when we are gone, we are in our late 30′s. I wish I was coping with this better but I am not, I am sad and so depressed and most of all scared to death about his future.

February 26, 2011 at 2:46 pm
(76) kit says:

How can you NOT be depressed when your beautiful little girl never looks at you or calls you mom. When she runs into the arms of a stranger and hugs them. When you feel like you don’t even exist to her. How can you bond with someone who doesn’t seem to know you exist? It’s like true love but being rejected. It hurts beyond words.

September 6, 2011 at 3:18 am
(77) Maria says:

Kit, I know exactly what that feels like. My beautiful little girl never seemed to care when I left the room or returned. Anybody could hold her–it didn’t seem to matter. I had to teach her how to hug and kiss me because, darn it, I wanted her to! Maybe it will help you today to know that fifteen years later, I am her favorite person in the world. She hugs and kisses me with real affection and says hi to me constantly with love in her eyes. Just keep trying and showing her what to do when you can muster the energy. This is a marathon so pace yourself. If you feel like taking a day or week off from the grind, do it. But don’t ever give up.

March 5, 2011 at 11:26 pm
(78) Nikki says:

I found this site because I am so desperate these days and needed to see if anyone else has hit the bottom I have. My son, now 14, is severely affected. His needs are growing each day. He eats constantly and I am the only one who does the cooking for him. He is allergic to so many foods and is sick frequently with staph infections (everything goes in his mouth or is licked), and ear infections and today allergies. Some days I don’t know how I will get food in the house.
Like so many of you, my “friends” disappeared when I had to be running from evaluation to school district battles and operating a home program. He never slept until I begged his pediatrician for sleeping meds. when he was nine. He still does not sleep regularly and it has caused me to gain a tremendous amount of weight and feel disoriented.
He is not usually aggressive and is a love bucket, but I have only had one night away from him since he was born due to having no family and no respite people who can handle wiping after BMs, changing diapers at night or feeding him constantly.
I cannot leave him behind.
I now try to just get through each day coordinating all of his services and trying to put together a plan for the near future with supported living.
Depression kills you. I have developed two autoimmune disorders and look like someone I don’t recognize.
How many of you eat when you can and have had to watch as your child urinated in a public setting or had to hide behind a bush for a BM because there is not bathroom facility nearby? At least more people are becoming aware and are more understanding,but the stares from other children as he grows so big and still has the cognitive ability of a 2 yr. old can make you so sad and, sometimes, angry.
At this point, I am trying to sleep more, even if it means he swings a few feet from me.
I just want some time to laugh and not have all these responsibilities ALL of the time.Onward to sedation for dentistry.
Isolation is so cruel.
Nikki

March 5, 2011 at 11:26 pm
(79) Nikki says:

I found this site because I am so desperate these days and needed to see if anyone else has hit the bottom I have. My son, now 14, is severely affected. His needs are growing each day. He eats constantly and I am the only one who does the cooking for him. He is allergic to so many foods and is sick frequently with staph infections (everything goes in his mouth or is licked), and ear infections and today allergies. Some days I don’t know how I will get food in the house.
Like so many of you, my “friends” disappeared when I had to be running from evaluation to school district battles and operating a home program. He never slept until I begged his pediatrician for sleeping meds. when he was nine. He still does not sleep regularly and it has caused me to gain a tremendous amount of weight and feel disoriented.
He is not usually aggressive and is a love bucket, but I have only had one night away from him since he was born due to having no family and no respite people who can handle wiping after BMs, changing diapers at night or feeding him constantly.
I cannot leave him behind.
I now try to just get through each day coordinating all of his services and trying to put together a plan for the near future with supported living.
Depression kills you. I have developed two autoimmune disorders and look like someone I don’t recognize.
How many of you eat when you can and have had to watch as your child urinated in a public setting or had to hide behind a bush for a BM because there is not bathroom facility nearby? At least more people are becoming aware and are more understanding,but the stares from other children as he grows so big and still has the cognitive ability of a 2 yr. old can make you so sad and, sometimes, angry.
At this point, I am trying to sleep more, even if it means he swings a few feet from me.
I just want some time to laugh and not have all these responsibilities ALL of the time.Onward to sedation for dentistry.
Isolation is so cruel.
Nikki

April 6, 2011 at 3:06 am
(80) Mary says:

I am the mother of a four year old autistic boy and I completely understand the depression that comes along with it. I have always been a depressed person and been diagnosed as manic-depressive but sometimes it is even harder to control with the responsibilities that come along with autism. My son is doing very well but you really are isolated and with his slow development things are usually about the same for so long. The worst is the screaming he does because he cannot express himself with words. I feel like I am trapped in a world of my own with him and no one else understands and can truely enter. He is my life and I have not spent a day away from him since he was born, daddy stayed with him at a family member’s one night. He is starting to pick up new things which makes each day a bit more interesting but to get through the day with little screaming is a joyous event in my life. I do believe they should have more support groups for families dealing with autism and when you do see a therapist of some type they should be more understanding of the things you deal with each day instead of making you feel guilty for the medications you may need. If it works dont mess with it!!!!

April 25, 2011 at 1:27 pm
(81) Mazy says:

I am so glad to know I’m not alone. Im on antidepressant to help deal with my preschooler’s severe autism. Hes nonverbal, cries and tantrums thru out the day cuz he is frustrated and cant comm. his needs. I keep hoping things will get better as he gets older, but it seems the older he gets the more frustrating he is. I love my asd child so much, but is hurts so bad to see him like this. The crying goes on throughout the day and I am so tired of hearing it and my heart aches for him, because I want so badly to make him happy and I hate seeing him in distress, it breaks my spirit to not be able to make him happy. My spouse is very good with our son and consider this ablessing. For those of you single moms and dads doing this on your own, i applaud you, since I believe if i had to go it alone, i would have given up. Even with the support of spouse, my depression sometimes is so bad that I pray for God to have mercy and take my son and I peacefully in the night. I feel so horrible and selfish for feeling this way. I even picture him and I in heaven enjoying each other, like I once pictured I would here on earth. I am not suicidal ( have no intentions of harming self or child) , but this path is so exhausting,sometimes I don’t want to walk it.I cant imagine what our lives will be like 10/20 yrs from now, but I have very little hope that I will ever feel true joy in my heart ever again. Im in therapy now for myself to cope w/life. I used to enjoy social gatherings, holidays, bbq, b-day parties and other celebrations. Now i dread them more than anything, i avoid going to most of them We pretty much only attend ones with immediate family. I used to love life, i now feel like i just manage life on a daily basis. I know I sound negative but that is just my sad reality. I am no longer the person I used to be. I was once happy, smart& vibrant now I just “fake” my way thru life. I put on a fake smile for my parents (who are very supportive)so they think im fine

April 28, 2011 at 2:14 pm
(82) Ruby says:

Mazy,
I totally understand how you feel. My son was just diagnosed and he is only 19 months old, but I watch him getting worse by the week. In his daycare, the younger boys have already surpassed him, and he has begun screaming and crying on a regular basis. His daycare provider is starting to complain about him so I will probably need to move him soon. I see the future for us and it is not looking good. I now dread what the future may hold. I’ve even regretted ever having a baby. I’ve had serious health problems in my past and have been through a lot of harsh things in my life, but this by far is the worst.

May 26, 2011 at 6:28 am
(83) Agnes says:

This article is spot on! My son just turned 7. He was diagnosed with autism at 3. I am still trying to accept his condition. I love my son but I am finding his autism hard to handle, especially when he’s having a meltdown.

I am lucky I have a supportive husband who will do anything for our son. He works hard to ensure he receives the best intervention and it is not cheap! I do agree there should be help for parents. The intervention helped our son tremendously but do not address the issues of carers. I have tried to reach out to our son’s therapist but although she has extensive experience in working with children with autism, she has no experience in dealing with parents’ feelings as she does not have an autistic child.

I have become very unhappy. This feeling is hard to shake off. I put on a cheerful face to everyone. But deep down I am crying! I go through each day on automatic. I know I need to talk to someone. So far the people I have spoken to gave me advice on how to cure autism. If there was a cure I would have put my son straight away on it! What I really need is someone to talk to, who is not going to judge me, pity me or offer me advice. Just someone to listen to me. I don’t think I am asking for much!

June 18, 2011 at 6:30 am
(84) Michael says:

I have an autistic child who at 6 years old is still non-verbal And I just want to know why only mothers will be depressed, as afather knowing that I will almost never have my son call me dad or have any of the normal milestones is truly depressing. So, yes mothers will be depressed but please dont forget the fathers.

July 12, 2011 at 10:54 am
(85) mother of Asperger daughter says:

I can honestly say that I have suffered with depression over my daughter’s condition-both before and after she was diagnosed. I had to fight to get the doctors to listen and realise something was wrong,and it was me that first said that I thought my daughter might be autistic. Still,when she was formally diagnosed,it felt like I’d been punched. I grieved,blamed myself,hated myself for “what I’d done to her”. Her father was then diagnosed with Asperger’s,and we were told it was commonly passed down from the male gene. I cried more-knowing he was now not only having to deal with his diagnosis,but blaming himself. And I blamed myself for not realising he was Asperger’s,therefore making it my fault as I was the one who had so wanted a baby. He refuses to get help,to talk to someone-so he continues with his sometimes aggressive behaviour when there is a sensory overload-such as his daughter getting overexcited or upset due to her Asperger’s and sensory overloads! We divorced sometime back and she visits him on weekends,but I worry because of the previously mentioned. So I spend my time tearful,stressed,depressed,thinking I was supposed to give my daughter a better life than this. I know it’s out of my hands-I can’t “take it away”. Luckily,here in the UK,therapies for her are free and we’ve recieved a lot of help. But I haven’t recieved therapy. I know I need it.

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