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

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.

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.

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)…..

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.

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.

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.

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.

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.

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.

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!

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.

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!

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..

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.

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

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.

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!

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.

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.

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

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.

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!

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 .

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.

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.

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

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.

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

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

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.

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.

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.

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

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.

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.

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.

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

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.

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!!

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.

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.

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

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

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.

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 ….

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!!

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!

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.

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.

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.

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.”