Encouraging Fathers to Participate in Autism Research

As discussed in our IAN Research Report on fathers participating in IAN, there are many reasons fathers have traditionally been excluded from research on child development, including research focused on children with special needs. Yet their information is crucial to researchers.

We are currently celebrating because more than 1000 fathers of children with autism spectrum disorders (ASD) are participating in the IAN Research project. Still, mothers outnumber them by more than 8 to 1. We would like to encourage many more fathers to join!

Fathers - if you are participating in IAN Research, what convinced you to join? If you have not, what barriers do you feel were in the way?

Mothers and others -- please share your insights!

I am a divorced father of four, the youngest a 10 yr old boy with autism. I have been the primary caregiver for my son for seven years. My experience has covered the downward spiral of a failed marriage, financial distress, re-orienting my life from construction sub-contractor to stay at home dad. Through this I have gained so much more from the fulfillment and joy in seeing Erik`s progress as he`s grown more socialized and outgoing. I won`t try to pretend its not the hardest thing I've ever done, but I don't regret a moment spent. I've felt the happiness of my son's growing sense confidence and shared all the triumphs side by side with the bravest, strongest person I've ever known. My heart swells with the memory of the first sustained eye contact, the first direct response. From his strength, through his ordeal, I've gained a sense of purpose I could never have known otherwise. Nothing in my life has been as important or rewarding.

Welcome to IAN, eriksdad, and thank you for sharing your story with us.

I think many parents feel as you do: that no matter how hard a road they have walked due to their child's challenges, it has been worth it. I have been looking through all the comments on family stress parents have left via the IAN Research Parental Depression History Questionnaire, and so many echo your feelings about both the difficulties and the triumphs. Over time, there is so much resilience demonstrated by families who have gone through so much.

I am father of 10y/o autistic twins. I have sole physical custody of them. I won't speak for other men but I will share my experience with you here. Women are hostile to men raising children alone. Most do not intend to be that way and quickly change their attitudes with exposure. However there are some who do not. I have heard one prominent speaker in the autism community, who is held in high regard, convey this message: "Men are constitutionally incapable of caring for autistic children" She captures the attention of 1000s of parents, teachers and researchers and spends an hour bashing her deceased estranged husband. There is much misplaced bitterness under the surface of many parents in this community and until we can accept our loved ones conditions, accept ourselves, we cannot accept 'The Other'

Women, be nice and we'll come around more. It's just that simple.

Hi Don S, and welcome to IAN.

It is interesting that you are relating a gender bias in the way you, as a father with physical custody of his children, are perceived.

Although there are many comments from parents participating in our research about how parenting a child with autism has brought them together, there are also many, many comments about anger and bitterness in a relationship. As someone with a PhD in sociology (with a specialization in gender), I think I can say that the same "gender relations" dilemmas that exist in society overall can be even more keenly felt by families struggling with extra issues, like having a child with autism. As individuals we are put under strain (often until the cracks begin to show). As couples and families, we are also put under strain. Men can be frozen out of a child's care and the decisions surrounding this... or women can be left with the reality of it while men escape to work. Either way, the situation is neither fair nor healthy. I would be very interested in hearing people's stories of how they addressed such dilemmas.

Here at IAN, meanwhile, we hope including mothers AND fathers in research will ensure that the experience of both men and women raising children with autism will be taken into account.

Hi,

I'm father of a 4-year-old boy diagnosed Autism Spectrum Disorder.
We're a family of four, with both parents working in demanding full time jobs and playing similar roles in the household. We haven't felt the need to scale back our professional ambitions as our kid is currently doing well. We can tell this by his degree of responsiveness and outward behavior. Before he was diagnosed, he's had a few episodes where he was very introverted and during which we had difficulty reaching him. In retrospect, often this has been in situations where he was left to entertain himself in unstructured environments, such as daycare without organized activities. We avoid these situations as much as possible now.
He does however respond very well to new experiences, as it broadens his limited "pool" of references where he draws from for conversations and creativity. I thought this would be interesting to share.

My experience with professionals we've seen so far has been somewhat disappointing. There has generally been a disconnect between what they think is important (i.e. the diagnosis itself) and what we're looking for, namely practical guidelines and tips to teach my kid the reflexes he needs to compensate for the lack of natural abilities in certain areas.
Our most useful learnings have been through trial and error, reading books and testimonies on sites such as this one.

Glad to join you!
D's dad

Hi Domisdad, and welcome to IAN.

It is so good to hear that your son is doing so well, and that he is able to enjoy and benefit from new experiences.

I think many parents have found what you did: that providing structure helps their child, while free-for-all, unstructured environments do not work well at all. When my son was small, visual schedules -- where you planned out the day with pictures to stand for expected activities -- helped him very much, as did a structured class or day. Now, written schedules serve the same purpose. As he got older, we also tried to build in flexibility by introducing the concept of "Plan A, B, C, D." That worked something like this:

"We are going to Target to buy that lego you wanted with your birthday money. That's our Plan A. If we get to Target and that lego is not there, Plan B is to go to Walmart and see if it's there. If it's not at Walmart, Plan C is to see if we can find it online. You can help order it, and then we can track the shipment online. If they don't have it anymore, Plan D is to look in the catalog and think of some other legos you might want." Basically, the idea was that you built in the expectation that things might NOT work out the way you hoped the first time. It can be a bit exhausting to have to think this far ahead, but I think parents of children with ASD naturally learn to do it anyway - to avoid meltdowns. Of course, you hope not only to avoid meltdowns, but to build into your child's own thinking a tendency to create alternatives in case things don't work out they way they wanted in other situations.

I just wanted to share with you one of my own "learned by trial and error" solutions.

New here and this is my first post. I am a father of 3 boys. My six year old is Autistic. It hasnt been an easy thing, there are many nights I am not sure what to do. But even if I am not sure what to do, I am very glad he is in my life. The first time you child acknowledges you are there, is like winning the super bowl.

I believe its important for both parents to be involved in a childs life, autistic or not. And I believe the most important thing is to learn to connect with you child and also you other family members. Timmy has taught me that. Even if others dont understand him, I certaintly do now. I have seen more progress in him just by finding different ways to connect with him. To know he matters. Heck I didnt even know I was doing ABA therapy till I saw a video on Youtube and also found this place.

I have a author friend that I have be-friended that wrote a book on this very subject. It might be of some interest to the IanProject and other dads.

Dads and Autism, how to stay in the game.
http://www.dadsandautism.com/Welcome.html

Our son becoming Autistic wasnt an easy thing for us, and it almost ripped our marriage apart. But we all learned that to truely be a family you, have to communicate, and alot of times that is not with just words. You have to give each other permission to not be perfect. And you have to discover what love really means. I am glad my son came into my life because by trying to reach him, I found myself.

Hi tbaxter, and welcome to IAN.

Thank you so much for sharing your story with us, as well as for the link to the book meant to help fathers stay connected to their child with autism. I'm sure there are fathers and others among our readers looking for such resources who will benefit.

I am a single father to my 7 yr old son who has been diagnosed with Developmental Delay Disorder PDD ADDHD and Speech delays. His biological mother, who gave birth last only 11 month with us before she walked out on us. Since then I have found out that my son's birth mother has been diagnosed with Schizophrenia, multiple personalities disorders, bipolar, and her IQ is 69. I admit I got hooked up with her not knowing anything was wrong until my son was 5 months old and one night I put him on the floor so he could learn to crawl and she go so mad that she threw a thick book at my son but I interfered and the book hit me. Anyway, my son has PDD, ADDHD, Speech delays, and Developmental Delay Disorder. Ive had full custody of my son since he was 1 yr old. I cant get child support due to the fact his mother is on SSI and though my son gets it it is based on my income. His mother has not bothered with seeing him even though the court order states she gets 1 hr once a week but we have been kind enough to let her see him all day and that was back in 2002 and 2003 but since then she refuses to even call visit, send b day card and gifts for him. Since Ive had full custody I am doing everything possible to get him to where he needs to be. Its been very difficult because he is very extremely hyper highly function yet he doesnt have enough to be classified with Aspbergers but he does have enough language where he is not autisic. However with his PDD and ADDHD, as well as Develomental delays and speech it all falls under the PDD and Autism Spectrum Disorder. I would like to get my son tested at Kennedy Krieger in Baltimore and see what they actually say. Im also wondering if they would even change his meds. I have met 2 doctors when living in PA that refuse to put him on Ritalin because that would only increase his hyperness.

Hi MB1977.

I just provided some information on how to get an appointment at the Kennedy Krieger Institute for you in another forum, but I'll post it here for you as well.

First, you call the Kennedy Krieger referral line: 888 554-2080. At present, they offer a menu of choices, but you would press "1" if you are interested in an appointment. The person who answers the phone would then do a fairly extensive telephone intake process with you, asking you questions about your child's development and challenges. They provide this information to a treatment team that decides what types of professionals your child might need to see for an evaluation. Within 2-3 weeks or so you would usually get a call from someone associated with that team who would speak with you about an appointment and put you on the waiting list. At that time, they will let you know about how long the wait will be. (The wait time varies a great deal depending on a child's age and individual circumstances, so it's hard to estimate one here.) Shortly before the actual face-to-face appointment, you would get a call regarding your insurance coverage. Various plans, including some of the HMOs or plans under Medicaid, are accepted.

It might be a good idea to ask about the insurance during the intake phone call, just so you'd know if what you have is accepted... You might even have time to switch to different insurance if it's not, since there may be a waiting time. You do not need any specific insurance to go through the intake process or get on the waiting list. As I said, they will call and make sure the insurance is all in order shortly before the actual appointment date.

I hope this proves helpful, and that you are able to get your son evaluated, whether at Kennedy Krieger or by another knowlegeable professional or center, soon.

In the meantime, I am sure you will be working with your son's school, his physicians, and perhaps others to try to help. As a parent myself, I know how difficult it is to learn what is going on with your child, and how best to help.

I have a couple of suggestions for you. One is to get in touch with your local chapter of the Autism Society of America for support and ideas about where to turn for all kinds of help for your son: http://www.autism-society.org/site/PageServer?pagename=community_chapters

Another excellent source of information on local resources is the Autism Response Team at Autism Speaks: 888-288-4762

For Maryland, I would also suggest Pathfinders for Autism, which is a wonderful and knowledgeable local organization serving families of children with autism spectrum disorders: http://www.pathfindersforautism.org/

You may also be interested in the information on this website about ASDs:

About ASDs: http://www.iancommunity.org/cs/about_asds/

Frequenty Asked Questions About ASD Diagnosis: http://www.iancommunity.org/cs/articles/frequently_asked_questions_about_autism_spectrum_diagnoses

Thank you so much for the reply. I will definetly call the Kennedy Krieger and I will check out the websites you provided for me. Because we're new to Maryland (though I lived there before I had my son) its new process for us. I appreciate the help. Thank you

Don S wrote:

I am father of 10y/o autistic twins. I have sole physical custody of them. I won't speak for other men but I will share my experience with you here. Women are hostile to men raising children alone. Most do not intend to be that way and quickly change their attitudes with exposure. However there are some who do not. I have heard one prominent speaker in the autism community, who is held in high regard, convey this message: "Men are constitutionally incapable of caring for autistic children" She captures the attention of 1000s of parents, teachers and researchers and spends an hour bashing her deceased estranged husband. There is much misplaced bitterness under the surface of many parents in this community and until we can accept our loved ones conditions, accept ourselves, we cannot accept 'The Other'

Women, be nice and we'll come around more. It's just that simple.

I am the sole parent of two disabled children. One is autistic and the other suffered head trauma in a school playground accident. Saying that women are hostile to men raising children alone may be a polite understatement. Many of them that I have experienced have gone out of their way to be a destructive force. When my autistic child acts out, women in my neighborhood immediately call 911 claiming possible child abuse. My legal fees due to the false clams nearly bankrupted me. Personally I really dislike having to battle for my rights against blatant lies.

This behavior is more than just a cultural trend, it is our social norm. Women can say and do what ever they please to a man and chances are better than not that the man (the actual victim) will be arrested and prosecuted for the woman's criminal acts. This social dilemma is pretty much out of control and science based fact are completely ignored.

Please tell me how IAN plans to get around this?

Hi Dad of X, and welcome to IAN.

I am so sorry to hear of the tremendous difficulties you have gone through as the sole parent of two disabled children, one with autism. This is a topic that researchers in the Sociology of Gender and the Family would surely be interested in understanding: the different experiences, attitudes, and difficulties encountered by mothers or fathers raising their child (disabled or not) on their own.

Because your question is not about autism research, I'm afraid it's not something IAN can address except to the extent that we share the comments fathers and mothers leave us as they fill in their IAN questionnaires. (You will sometimes see these included in our IAN Research Reports.) However, one important role we play is matching researchers and families. So... if a sociologist was looking for parents with a child with autism who were raising that child on their own, the researcher could contact families through us, which would help them get their study done.

Connie (IAN Staff) wrote:

As discussed in our IAN Research Report on fathers participating in IAN, there are many reasons fathers have traditionally been excluded from research on child development, including research focused on children with special needs. Yet their information is crucial to researchers.

We are currently celebrating because more than 1000 fathers of children with autism spectrum disorders (ASD) are participating in the IAN Research project. Still, mothers outnumber them by more than 8 to 1. We would like to encourage many more fathers to join!

Fathers - if you are participating in IAN Research, what convinced you to join? If you have not, what barriers do you feel were in the way?

Mothers and others -- please share your insights!

I am very interested in seeing some of the finding from this project. I work as a teacher assistant/one-on-one for an ASD boy, 11 years old. The interaction he has with female teachers is so different from the interaction he has with me and his step-dad. I look forward to reading more.