Fathers Hard Hit by Autism


Fathers Autism

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A groundbreaking University of Wisconsin-Madison study reveals some hard truths about the toll autism takes on fathers. According to the researchers:

* More than 30 percent of fathers of grown children with autism experience symptoms of depression so severe that they warrant clinical attention.

* Fathers of adolescents and young adults with autism experience high levels of depression and are pessimistic about what the future holds for their son or daughter, much more so than dads whose kids have other disabilities such as Down syndrome.

* Like mothers of autism spectrum children, fathers experience higher stress and that stress remains constant even as their children age. 

This is the first time researchers have specifically studied how dads cope as their autism spectrum children get older. While the mitigating factors such as the child’s behavior, how many children in the family have a disability, the father’s age and the mother’s well-being did factor into responses, fathers of children with autism still suffered more than those with other disabilities.

Extrapolating from my previous posting about the financial toll autism takes on moms, it’s not difficult to surmise some of the reasons for this phenomenon. Fathers of children with autism work more hours than other fathers to take up the slack for their hard-pressed wives, so the pressure on them to provide for their families is enormous and during this hard economy, potentially crushing.

And as the study on moms established, services for autism are fragmented and unequally covered by insurance, accounting for the findings relative to other disabilities.

Adolescence is a time of stress for all parents, but for parents of children with autism, abstract fear of the future now becomes palpable. 

It’s a well known fact that resources for young adults with autism are scant, so adulthood rarely signals the end of a father’s financial burdens. Pessimism is understandable given the unrelenting pressure and the contemplation of what will become of a child after the parent is gone. Even in my posting about grown autism children clustering to live independently, it was the parents, (i.e. largely the dads) who put up the money to establish and maintain their child’s housing. 

And this is just the financial angle. While there are support groups for autism dads, finding the time for them can be problematic and men are more socialized to just soldier on. The resultant emotional isolation can easily foster depression and if they look to their wives and see someone suffering from the burden of the daily care of the child, the father cannot help but be affected as well.

This study is just the tip of the iceberg about autism dads and as one of the researchers put it, “This is the first step to drawing attention to dads, we need to get away from just looking at moms.” 

Dads, we’d love to hear from you…..

33 Responses to Fathers Hard Hit by Autism

  1. tom burke says:

    Its great to draw attention to the problem but lets not succumb to self pity and despair. Autism is a deceptive and tormenting beast but WE are not alone. there is help and hope.

  2. Susan says:

    True enough! Letting people know they aren’t alone in their feelings is huge.

    Susan Moffitt

  3. Kevin Bowden says:

    Could not have said it better than Tom Burke ,Support is the key for the whole family.Moms are the real heros here.

  4. Susan says:

    Well, we moms appreciate your appreciation.

    SM

  5. Jackie Cunningham says:

    Moms are not the only heroes; unless Dad has left or is non-supportive / hands off in the raising of the kids. I am blessed with a very hands-on husband. Finances are surely an issue, as I am unable to work right now having 2 sons with autism (we have a 10yr old and a 6 year old who are both low functioning and non-verbal). Although I am the one here at home all of the time, Dad never stops helping or loving my sons and me; from the time he gets home until he passes out from exhaustion in the wee hours of the morning. I wish there would be more attention given to the hero fathers of autism…they do exist and I appreciate them :)

  6. Susan says:

    I’m happy for you that you have a such a great husband! I think our commenting dad, Kevin, was being gracious and self effacing, we all know that dads are heroes too.

  7. Matt says:

    We have been dealing with autism in our family for about six years now. It really sucks.

  8. Susan says:

    I know what you mean, it’s a harsh reality.

  9. Nathan Kartchner says:

    We have a six year old with high functioning autism. Some people don’t understand what it is like. It sure takes a lot of patience that is for sure and alot of love. The melt downs and him throwing things, I could do without.

  10. Susan says:

    People really don’t get it, I know.
    Patience and love is right, and yes, a day with few or no incidences is a very good day. You sound like a fine dad.

  11. Ron says:

    I was recently searching for an online father support group. Do not know if this is what this is supposed to be but seems like it is down those lines. Is there such a thing where fathers as myself can “vent” (I mean that in a productive way) to another father and get some advice? Thanks for any help.

  12. Tony says:

    Hi Ron,

    I am here for the same reasons. Looking for other fathers that can share experiences. I am the primary care-giver for my 3 year old daughter with ASD. I am learning how to seek therapy, advocate and navigate the obstacles but it is trying. I have learned when I am at my highest levels of stress, I remind myself what it takes to deal with Autism; Unwavering Patience. I visualize the word and hear it in my mind. It gives me strength and the resilience to get through tough times in the most constructive way I know how. I wade through all the info to gain as much knowledge as I can.
    The initial shock of diagnosis is gone. Now I can focus on what I need to do for my child. She is what drives me but I must remind myself that in order to do my best for her, I need to learn how to take care of myself. That is where I am stuck now and seeking answers.
    My biggest enemy isn’t Autism at all. It’s myself.

  13. saeed says:

    Hi guys
    My beautiful son was diagnosed with ASD over 1.5 years ago. He is 4 and not talking. Worse of all, he is my only child. I still haven’t come in term with it. I haven’t had a good night sleep since that September day in 2011. I hope I get better as I now the stress from work and my son will definitely get me unless I can do something about it. So far not successful. I wish you all good luck and I hate this thing from bottom of my heart.

  14. Susan says:

    I’m so sorry. Are you getting enough help and support? Is your son in treatment? Early intervention can bring huge gains. If there’s something I can do, I will.

    There is still hope, not for “normalcy”, but for real progress.

    Warmest Regards, Susan

  15. saeed says:

    Thanks Susan. We live in the U.K and my son has his private tutors at home. Like other fathers and mothers too sometimes the whole thing is so frustrating and I think I just wanted to get it off my chest for a short time. Are you guys based in States? Thanks again for offering help. I let you know if there is anything to ask. Good luck on your work.

  16. Susan Moffitt says:

    Well, I’m always available for venting. I’m glad your son has tutors. Sounds like you’re all over it.

    My editor is in Florida and I’m in Seattle.

    Best Wishes,

    Susan

  17. Ian "Wolf" Williams says:

    Howdy, like many other dads, I too am searching for a support group for dads of kids diagnosed with autism.

    (that brought me here!)

    If any one knows of any in the Metro NY area please post. All i see are moms groups, and I know that men process and vent way differently than women. I’m finding that I need to be in an ‘iron sharpens iron” environment.

    My son is 5, diagnosed with PDD-NOS. Some days are good, great, and then not so great. I try to rationalise it and tell myself “dude, your situation aint that bad, you’ve seen more severe cases while visiting other schools, so count your blessings”. Sometimes it works, sometimes, not.

    I find myself going from anger, (not at him), to sadness, to depression to WTF???? Usually goes away for a bit when I’m at my desk and he runs over humming, and hugs my arm.

    I like the “unwavering patience” thing. I may have to print that out and put it on my wall.

    Be well, Stay strong.

    Wolf

  18. Susan says:

    I couldn’t find a dads group either, but at this page is a link w/advice on how to start your own group.

    Thanks for writing and good luck finding other autism dads…Susan

    http://autism.meetup.com/cities/us/ny/brooklyn/

  19. Tom says:

    It is hard being a Dad of children with special needs. We have 16 year old triplets, all 3 with special needs. Son #2 has ASD & ID.

    I am scared to think about what their lives will be like without their Mom and me. Will Son #2 be able to get and keep a job? Will he have friends? Will he be happy? Will the special needs trust be enough for all 3 of them?

    The stress level in our house is beyond high. My relationship with DW has suffered from the stress and lack of time. Its frustrating. It was not what I signed up for. I want to scream, but she can’t hear me because she is under so much stress too. We have to stay together, because neither of us can do the job alone.

    Sometimes the children’s behaviors are too much. But what choice do I have. How many times can I hear the same questions from Son #2 about his preferred topic?

    The only friends we have are from the disability community. Old friends and neighbors do not want to spend time with us as a family. I want to scream the next time somebody says “God would not have given you more than you can handle”. Well, sometimes I can’t handle it!

    But then there are the wonderful times. Like when they learn to do something new and demonstrate independence.

    Thanks for listening.

  20. Susan says:

    Wow. I’m a single mom of autistic 17 yr old twins, so I can empathize to some extent, but triplets! The only thing I can suggest is to check out the DVR, Dept of Vocational Rehab and see about getting them SSI when they turn 18 (assuming you make too much money to apply for them now). DVR has a program for transitioning to adulthood that I hear is quite good. They pay for higher ed and job training. (I’m just going to the orientation next week). SSI will guarantee a monthly income close to $800 and open doors to other things like housing and programs and DVR costs completely covered. After 18 the parent of the disabled child can get a stipend for being his/her aide.

    Here’s a website too: http://www.autismafter16.com/

    Maybe a divide and conquer strategy might work better with your friends who are overwhelmed by hosting all your kids at once. Maybe if you bring one child at a time to their gatherings it would work. Just a thought…

    Best of luck to you. Feel free to keep me posted…S

  21. craig says:

    hi wonderful people. reading this page is very emotional for me having a 16 yr. old with autism. there has been many rough days and nights and lots of great times also. I stay home with my son while my wife works. We are drifting apart and I just don’t no where to turn to for help. wondering if anyone going through the same thing… love you all

  22. Susan says:

    Craig, your post brought tears to my eyes. Maybe you could show your wife this article…God bless…

  23. David Shechter says:

    I am the father of an 8-year old son who was diagnosed with autism at age 4. Some days are hopeful, others pretty bad. I have done my share of grieving, always in private. But I refuse to be unhappy about it. You’ve just got to hang in there and be strong. There are dark days, but there are other dads going through the same thing. My friends and my faith pull me through. I realize no one asked for advice, but what can I tell you – I’m a guy – don’t bog down in self-pity or a routine that doesn’t give you room to breathe. Exercise, et involved in your church – whatever works for you. Craig, please don’t let this situation continue. Hire a babysitter and get out a little. See a movie together then talk about it over dinner. You’ve got to spend some time talking about something other than your kid. God bless.

  24. Timothy says:

    As I speak I’m laying in bed with my 5 year old autistic son and my wife. we don’t trust him in a room of his own because he escapes one time I found him in the middle of the night running around in the snow.I just can’t trust him by himself at all. I have to follow him every where he goes. I love him very very much but I’m still feeling the sadness of crust dreams for my son. the thought of having to take care of him the rest of my life scares me. I love my Little Jaydrien but sometimes I feel like I’m at the end of my rope. Granted the theropits that come to work with have made Progress. But it feels like I’m not getting them fast enough. He is starting to talk more. mostly still bibber babber.and they are training him to go potty. I just don’t see the light at the end of the tunnel. my wife sees it I don’t. and it’s really hard to explane that to her. Even though I work I feel like it’s not a break because I’m at work. My poor wife doesn’t get break at all. and with all her nerve pain from her head to her feet. she feels like she can’t do much. My wife may be facing Multiple Scurosis that too scares me because I May have to take care of him by myself and only myself one day. Anyway i needed to vent I hope there is someone out that can really sympothis with me and help get me into a group in Utah. I really know I really need it, and so does my wife we don’t get much time together or time with our two older kids.

    Thanks alot for taking the time to listen

    -TIM-

  25. Susan says:

    I just found this website:
    http://www.utahparentcenter.org/disabilities/autism/
    You could call and explain your situation and ask for suggestions. I know it’s very tough and exhausting and that alone can make the future look bleak. Every day is simple survival. It’s important to reach out for help and relief. Maybe there’s a therapeutic kindergarten your child could attend. You may qualify for respite care.

    Your child has his own unique journey and in the sweep of time you will be amazed at the gains he will make.

    If your wife has MS, low dose naltrexone (LDN) has been effective with this and other auto-immune conditions. One of my sons takes it for Crohn’s and it’s really helped. It regulates the immune system and is available through a naturopath’s prescription. Relatively inexpensive too ($40ish)

    Good luck to you and yours….Susan

  26. Ronald Palmer says:

    My name is Ronald Palmer and I am doing my dissertation on fathers with children that have autism I need fathers that are willing to talk to me I’m in a PhD program in counseling and I realize because I have a six-year-old that has been diagnosed with autism that the information and articles are focusing on the children and almost there is limited research providers

  27. Abbas says:

    Just having some catharsis here. My 3 1/2 yr old with ASD is really playing up. My 2 older boys aren’t much help, the oldest being deaf with possible Aspergers and the other who might be ok despite Global Developmental Delay.

    It’s nice to know there are articles acknowledging the Dads. I personally believe the only people that can truly empathise and sympathise are those who are in your position.

    But there are days I wish my boy could just disappear. I love him, but he drains me. I get moments when I love him unconditionally but these are fleeting. I’m just grateful to get 10-30 mins away from him when my wife takes over. Big difference is that she doesn’t get a break, whereas I get to go to work and have to deal with patients, some of whom have genuine problems (!).

    Anyway, happy new year. On to the next challenge

  28. Michael LeBlanc says:

    Ronald Palmer – please send me an e-mail as I would like to help you. I have 19 yr old son with Autism. I also work in the IDD industry. My wife and I are big proponents of “The Diet” Get your diagnosed kids off the wheat and dairy and see if this helps. It usually helps with sleep and the tantrums “fits”. I am also starting a support group for Dad’s in our area. Just getting started with it. If anyone has any info?

  29. jeremy says:

    I am a 37 year old with a wife of 11 years. We have been together for 21 years. We had our first child (our beautiful son) almost 3 years ago. He was diagnosed with autism early and it has been a struggle ever since. I love my family very much and work hard every day to provide a good house life, and anything my wife and son could ever need. My wife is the main care giver for our son. I go to work for 9-10 hrs a day,she stays at home. Then I come home to try to help with the caring of our son. My day start at 8am and i dont go to bed until 12-1 am. On the weekends i’ll try to get up before my son and wife, try to get the house picked up ,dishes done, clean up the chaos of toys, so my wife and son can wake up to a calm environment with no chaos! Long story short…My wife is very vocally aggressive towards me and say “She never gets a break” even after my son gets up and i try to play the role of mommy.(never works). I tell her to “get some sleep” because she is usually up until the break of dawn with our son. I try to take care of the physical things around the house that she has no time for,and she does all of the mental work. Like all the therapy appt, the doctor visits, and the education on our son. I myself have a reading disorder and I just cant read/comprehend all the facts needed to understand autism. So i rely on my wife for that. But when I try to put forth the effort and help, stay up as long as poss. to help her get that break…( play games, watch TV, play on the computer, etc. have a little time for her self) she chooses to read more about autism, not sleep, and then proceeds blame me for our son having meltdowns. I’m not sure or understand why (at the time) he is having the meltdown, but i get the brunt of it and told “I never help I hinder and I am just thinking of myself”. I have been threatened to be kicked out of the house a number of times. All I am trying to do is help and love my family the best I can. I don’t feel I think of myself. I truly love my wife and only want her to be happy and not miserable. But caring for the care giver is harder than dealing with the autism. Very confused and don’t know what to do.

  30. Susan Moffitt says:

    I really feel for you. Extreme sustained stress brutalizes relationships. You each and both experience isolation. It sounds like you need more than the two of you to bring you relief. I don’t know what’s available in your area, but some kind of therapeutic preschool for even 3 hours a day would be great. Or another competent person to give you both a break so that you can spend time together. I can understand her obsession with learning more about autism, but obviously it’s interfering with her personal well-being. Your wife could benefit from an autism support group. Those kind of groups often provide childcare for meetings. Check out what resources and services are available in your area. Let me know if I can help you in any way. Best, Susan

  31. Brandon says:

    My comment is to Susan. Our family was hit hard Feb 18 2014. Among various other hardships our 2 and a half year old son was diagnosed with ASD. Most days he is a handfull, to put it lightly, but he still remains our passion and the love of our life. We are taking things one day at a time. I have been battling with substantial depression. Dr. Has prescribed many different types of antidepressants for me but to no avail. I’ve been searching and searching for some sort of remedy despite my Drs efforts. Guess what I’m trying to say is the I have found some peace of mind through the literature found on your site. I would like to get more involved. Not sure how to exactly. This is all new to me. Looking forward to talking with you and other dads with similar issues and getting to know this site a little better. Thank you for your hard work. Anxiously awaiting a reply.

  32. Susan Moffitt says:

    Thank you for writing. I’m glad you’ve found solace in the site. My son used to be on antidepressants but a specialist had me wean him off them and replace them with Zen Mind, a natural supplement with no side effects.
    http://www.supersup.com/nutricology-zenmind-60-vegetarian-capsules-713947547001
    Zen Mind creates a clear, calm mind. Beyond that I would say to try to take care of yourself to the very best of your ability. (Mind you, this is something I still struggle with personally). Dealing with autism can be intensely isolating, so the fact of your reaching out is a huge positive. Maybe you could connect with other AS dads in your area.

    As far as your child goes, I would pay special attention to his diet. There’s lots of info on this site about diet and if i had anything to do over, it would be having my child tested for food allergies early on. Undiagnosed food allergies can exacerbate autism symptoms and lead to serious problems. And if you find he has no allergies, that’s a great rule out. Offering pure and healthy food is of paramount importance, as is limiting or eliminating refined sugar. You’ve got early intervention on your side, and that a huge plus.

    If I can be of further service to you, please let me know.

    Susan

  33. Brandon says:

    Thank you for writing back. I replied to your
    advice and words of encouragement through my gmail acct. But was rejected by your server. System error of some sort. Was a long reply and I don’t have the time right now to retype the whole of it. Just wanted to say thank you very much for now.

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