I think every family wants what's best for their autistic child, and one of their biggest worries is divorce. It's not surprising, since popular culture so often states that 80% of families with autistic children get divorced. Thankfully, that statistic seems to be more widespread than valid. I’ve published a few posts on the theme of divorce statistics among families with autistic children. You can find more details about divorce rates in the Kennedy Krieger studyand the Easter Seals survey.
Fortunately, it’s an intriguing issue, and researchers continue to investigate the question. Recently, The Journal of Family Psychology published a study by Sigan Hartley, in which she looked at 406 families of autistic children, as well as an equal number of parents of typical children. The study found that divorce rates were equal up to the child's age of eight, after which time the parents of autistic children were more likely to divorce. The study found a 23% divorce rate for the autistic families, compared to 14% for the typical families, still a far cry from the often reported 80% rate. Hartley suggests that the difference in rate found between this study and the Kennedy Krieger study was due to the age differences of the children. The Kennedy Kreiger study, which found equal divorces rates regardless of the presence of autistic children, looked at children under 17, while Hartley’s study included children into middle age. Clearly, this is not a simple question, and more research will give us more details. But, the good news is that most families do manage to stay intact, regardless of their children's diagnoses. Happy holidays to all my readers! Thanks for your comments, suggestions and emails. I'm so fortunate to hear from you.
Enjoy your celebration and I'll be back in the new year! Are kids today over-medicated and over-diagnosed by their hovering helicopter parents? Or, is all the medication and treatment necessary to help kids manage their very real mental disorders? Those are the questions Judith Warner addresses in We’ve Got Issues: Children and Parents in the Age of Medication. As Warner explains, she started writing this book based on the premise that today’s kids are over-medicated and over-diagnosed, but as she continued her research, she decided that the media and it’s anecdotal evidence were oversimplifying the picture. As an engineer, I love that Warner actually researched the topic, and allowed the evidence to influence her thinking. I also appreciated that she has such an extensive reference list, over 50 pages for those who want to learn more. As a reader, I appreciated the well written style of the book. But, as a therapist, I thought the conclusions were too simply stated, and the conversational, anecdotal tone was relied on so much it interfered with a more rigorous analysis. Surely, the truth lies somewhere in the middle. Some parents hover, expect too much from their kids, and pathologize normal behavior. Other parents, certainly the overwhelming majority of the families I’ve seen, are dealing with kids who are clearly struggling, kids who have evident difficulties, and their parents allow medication and diagnosis only with caution and reluctance. But the way to illustrate this truth is through facts and data, and too often Warner relies on examples and stories from the families she’s interviewed. A compelling read, no doubt, but ironic in that Warner is criticizing the very type of research-by-anecdotal-evidence that she’s using here. Warner also criticizes the mental health treatment in our country, and I don’t think anyone would argue with her. But she illustrates her thesis with a series of examples from many of the families she’s met, who told of shoddy treatment and erroneous diagnosis. Warner complains because there’s no clear path for parents to take, and they end up “wandering in the dark forest, without a compass, as they tried to figure out how to help their son.” Again, although I agree with Warner’s concerns, it’s a sad truth that mental illness and its treatment is so complex that there’s often more art than science involved. The best treatment may involve uncertain diagnoses, trial therapies, and a great deal of uncertainty. There may not be a clear path. Still, I’m including this book on my blog list because, in spite of its shortcomings, it is a worthwhile and interesting read. With its extensive reference list there’s plenty of material so you can take your own understanding to a much deeper level. Every year I write a post to adults with Asperger’s and autism, about how to manage all the stress of holiday get-togethers. (Last week I did a similar post to parents of kids on the spectrum, because they deal with similar pressures.) And every year I hear the same comments and concerns from people on the spectrum. That all makes sense, because families, friends and coworkers can exert a lot of pressure on you to join in, be a part of the festivities, have fun. But, what’s fun for the crowd may not be fun for you. To balance out all that pressure, I wanted to restate my comments from last year, and the year before. Here are my tips for how to manage the holiday stresses.
Plan Time for Yourself If you find yourself getting overloaded, it’s perfectly acceptable to step aside and spend some time alone. Go for a walk, find an empty spare room, or offer the do all the dishes by yourself. Family members may pressure you to join in the “fun” but it’s fine to say that you just need a bit of time to yourself. Choose Your Battles You’re an adult now. It’s OK if your family doesn’t understand you, or if you can’t convince them that you’re right. Agree to disagree. Some battles are just not worth the emotional energy. No one has to get all their needs met by their family, friends can offer support and understanding you can’t get from some of your family members. If It’s Too Much, Go Home Early Again, you’re not required to stay with the family on holidays. It’s your job as an adult to take care of yourself. Come late and leave early if that’s the best way for you to take care of yourself. You can even choose to stay in a hotel, and just come over during the day. Look for the Bright Spots Try to find an activity that’s enjoyable. If the long family conversation is too much, go sit at the kids’ table and be the fun adult. Or, pull out old pictures and reminisce with your sibling about funny childhood times. An older relative may have a lot of interesting memories about their youth and family and this can be a more low pressure way to connect. Try Giving Sometimes the best way to manage when you’re not getting what you want is to shift focus on to more positive areas. Think about all the things you’re grateful for this year. Look around and see what you can do to help out. Above all, remember that as an adult it’s your right and responsibility to take care of yourself. Do what you need to to feel good about this holiday. Still getting pressured? Know that you’re not alone. That’s why I post this same advice every year. Over the years I’ve posted several articles about how individuals and families can cope with the holidays. And, of course, the same issues come up every year. Families travel, visit, have massive, loud get-togethers. Unwanted advice, comparisons, judgments are always there, maybe under the surface, maybe right in your face.
In view of that fact, I want to repeat the same thing I said last year. You know your child. Just because your child is acting up, or not matching the achievements of cousins, or won’t eat the special dinner Grandma made, does not mean that you’re not great parents. And it doesn’t mean that you don’t have a wonderful kid, with his own special gift and talents. Please take this holiday season to appreciate the child you have, and to trust yourself as a good parent. And here’s last year’s article, in case you didn’t read it then. The holidays are coming up and for a lot of people that means getting together with extended family and relatives you haven’t seen in a while. This can be a great chance to connect, feel supported, even show off a bit with all the progress your child has made. But it can also mean unwanted advice. Your parents, your sister-in-law, your best friend from high school probably mean nothing but the best for you and your family. But they also may not have a special needs child and they may not understand what it is that your family is going through, or what your child needs. So often I’ve heard the same story from clients. A well-meaning relative says something like, “If only you’d do _________, your kid wouldn’t do _______.” or “Trust me, your kid just needs more __________, and he wouldn’t be so _____________.” You can probably fill in the blanks, there’s a lot of advice out there. The fact is, and I’ve said it before, some kids are just tougher to parent than others. Your nieces and nephews may just be incredibly easy-going children. It doesn’t mean that you are not also a good parent. Your child may just be wired differently, temperamentally more sensitive, more strong-willed, or more emotional. I’ve worked with so many different kids over the years. The truth is, some of them are so easy and low key, they practically parent themselves. Other kids are so difficult, it’s hard to manage them for just a brief while, much less an entire holiday vacation. Add in some travel time, late nights, too much stimulation, and it’s not surprising that things get out of hand. So this holiday season, I’m asking you to trust yourself and the parenting skills you’ve developed by taking care of your child for all this time. Listen to the advice politely if you want to, but don’t think that any other parent is more capable than you are. Your child is lucky to have you as a parent. One of the hardest parts about the autism spectrum can be the feeling of separation it brings about. Adults on the spectrum may feel isolated and different than other people they live and work with. Parents of autistic kids can feel judged and criticized by other parents, especially those with easy children. Probably most difficult is the children on the spectrum, who often suffer through teasing, bullying or just being left out. I think sometimes this isolation can be toughest for kids in mainstream schools, where their academic abilities are strong, but their social skills keep them from connecting with classmates. So often, the typical kids don’t understand what’s different about their autistic classmates and neighbors, so they might view autistic behaviors as mean or unfriendly. And the sad result is that the autistic kids get left out. Education and communication can go a long way toward creating understanding, and books can be the best way to start that conversation. One sweet picture book I recently read is Anthony Best by Davene Fahy. In this simple book, Fahy explores the relationship between Anthony, a child on the autism spectrum, and his neighbor Hannah. The book illustrates many of the behaviors that might be puzzling or upsetting to neurotypical children, such as stimming behaviors, lack of eye contact, and communication differences. These behaviors are presented in a simple, non-judging way, which leaves plenty of space to have a conversation with young readers. If you have a child on the spectrum, or with behavioral or learning differences, this book could be a good choice to present to neighbors or friends who want their children to learn a bit more about how differences don’t have to keep kids from being friends. And, Anthony Best would be a nice book for any teacher to have in the classroom. I’ve long been a fan of Zosia Zaks, author of Life and Love: Positive Strategies for Autistic Adults as well as numerous articles on autism related topics. Zax’s organization, Zax Autism Consulting, is sponsoring a sexuality workshop for adults on the autism spectrum. Unfortunately it’s not local to the Bay Area where I work, but for those readers in Baltimore, MD, please consider attending. The presentation is in two parts, on the evenings of December 11, 2010 and January 15, 2011. For more information, contact Susan Howarth at (443) 676-5366 or successtransitions@comcast.net.
I’ve noticed that parents of kids with special needs tend to have one thing in common: the strong desire to reach out and help out other parents dealing with the same issues. Maybe it comes from dealing with so many unknowns, or maybe it’s an understanding that so many of the current advances in treatment have come about because other, earlier parents also shared. Obviously, research is important in learning about a condition that has many more questions than answers.
In any case, here’s one opportunity to reach out, and it doesn’t take much time. Mischelle Miller-Raftery, a doctoral student in psychology at California Southern University, sent me an email saying that she is conducting a study on potential prenatal environmental triggers of autism. Ms. Raftery is looking to survey at least 50 mothers raising children who have been diagnosed with autistic spectrum disorder (Asperger’s Syndrome, autism, and pervasive developmental disorder-not otherwise specified); and 20 mothers whose children have not been diagnosed. She inviting readers to participate in this study. If you're interested in taking the survey the following link will take you to it: https://www.surveymonkey.com/s/3YBPGBT. There’s a contact number for Ms Raftery on the survey information page if you have any questions for her. The Autism Spectrum is so broad, the gifts and difficulties so varied, that people often tell me about how they feel alone, that their experiences are different than others, and no one understands what they’re going through. And, for those raising a child on the spectrum, there are ongoing challenges that can feel very isolating for parents as well as kids. It starts with noticing something concerning about a child, then moves to dealing with the medical professionals, getting the right diagnosis, finding the right services and the appropriate educational setting. Sadly, the typical world can be a harsh and judging critic along the way. And the difficulties don’t end in adulthood, because often special needs adults need individualized plans to ensure appropriate employment and living situations. Because each child is so different, it’s not a one size fits all situation. That’s one way that books and blogs can be vital, as the link connecting individuals, showing people that they’re not alone and others might be going through a very similar struggle. A Regular Guy: Growing up with Autism , by Laura Shumaker is an excellent example of a book that helps create that connection for parents raising kids with special needs. Shumaker chronicles her struggles with the medical profession, helping her son find the right school setting, and to fit in with neighbors and friends. She’s honest about her family’s struggles, and compassionately attuned to the pain her son goes through as well. The hardest parts of the book are those describing the many tough decisions Shumaker is forced to make, often for her son’s own good, but also hard for him to accept. I recommend this insightful book for any parent dealing with those tough choices, and anyone feeling isolated or judged by their parenting situation. I'm never quite up to date on TV viewing, since I watch everything off my DVR, so I'm commenting about a show from a few weeks ago. Parenthood, Season 2, Episode 4, which features a family dealing with a child's Asperger's, talked about the dreaded divorce statistic "80% of families with an autistic kid get divorced." Fortunately, that's just not true. The 80% statistic is an enduring myth I see quoted frequently, but studies just don't back it up. The divorce rate seems to be about the same, whether a child is autistic or not. Even worse, the show quoted that the character's therapist told her that it was true. Lesson 1: Don't believe everything your therapist tells you! Lesson 2: Just because your child is autistic, doesn't mean you're doomed to divorce. You can read an earlier discussion of this topic on my Divorce and Autismpost. Please don't skip the show because of one bad statistic. Autistic kids are varied, and every family is different, but in general, Parenthood seems to do a pretty good job of presenting the joys and struggles of raising an autistic child. |
Patricia Robinson MFT
I'm a licensed therapist in Danville, California and a coach for Asperger's and ADHD nationwide. I work with individuals of all ages who have special needs, like Autism Spectrum Disorders, ADD, ADHD, and the family members and partners of special needs individuals. Archives
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