For many of the families who are working so hard to do what's best for their special needs child, there's also a typically-developing sibling who is heavily impacted by the situation as well. Having a special needs brother or sister has both positive and negative facets, and most parents are extremely aware of both.
Because I spent many years working in school settings, I frequently had the opportunity to work with several siblings from one family, including the special needs child and the typically-developing sibling. From this experience, I've developed suggestions that could make life easier for your typically-developing child. Certainly, this is not a comprehensive list in one article, but instead a few tips for what I've found to be most important for the siblings of special needs kids.
1. Acknowledge everyone's mixed feelings.
If you only consider one item, this is the most important. Siblings of special needs children typically struggle with guilt. Of course they love their brother or sister, and may enjoy many aspects of their relationship. Kids with special needs are more than just a diagnosis, and family life can be filled with fun and joyful moments. However, realistically, special needs kids have "special needs" and much of the family energy will revolve around getting those needs met. It's tough for the sibling to be feeling embarrassed or resentful of a brother or sister, when they can see the difficulties they may be having. At the same time, when they look to their friends with more typical families, they are aware of how much easier that family life can be.
As parents, you have mixed feelings about the special needs as well. The best thing you can do for the typical sibling is to acknowledge your own mixed feelings, and give your child permission to feel that way as well.
2. Spend time alone with the typical sibling.
All kids need time alone with their parents, especially in this situation. Time alone will allow you to do activities that may not be possible with the whole family, and allows you to focus on just one child. When fun parent activities aren't possible, even a trip to the grocery store can be special if it's just the two of you.
3. Find kids a neutral person to talk to.
It's especially tough for children to share all these mixed, guilty feelings with their parents, who are far from impartial. It can be a real gift to your typical child to find them a understanding adult to talk to, whether a family friend, a coach or teacher, or a professional. Sibling support groups, if run by skilled leaders, can be useful as well.
4. Don't make your kids responsible for their siblings.
It can be tough to manage all the responsibilities of a special needs family, and the typically developing sibling may be very mature, responsible, and even eager to help. It's easy to fall into the trap of depending on this child to make your life easier and help with a brother or sister, but it can backfire. Children develop best when they are treated like children, not little caretakers. When you want to give your kids responsibilities, it's better to find household chores for them, while you take care of the family members.
5. Remember the advantages.
My intent is not to add a heavier load onto what may already be a very stressed family. Kids with special needs siblings generally learn to be especially compassionate, thoughtful, and caring adults. The sibling relationship can be much closer and deeper than in other families. And the most important thing any child needs is a loving parent. So do the best you can for everyone in the family, including yourself, and never feel guilty about being less than perfect.
It’s exciting to find researchers focusing on all the strengths that go along with autism and Asperger’s, the enhanced abilities and skills, and not just studying deficits and difficulties. On that topic just this month, there was an interesting study published in the journal Human Brain Mapping.
The study compares autistic and non-autistic individuals’ performance on a standard assessment tool called Raven's Standard Progressive Matrices (RSPM). What’s perhaps most interesting about the study is that the autistic subjects performed better than would have been predicted by the results of their IQ tests, and that the autistic subjects, while as accurate as their non-autistic counterparts, performed the test more rapidly. There were also differences in which areas of the brain were active, indicating that the autistic subjects used more visual processing in their reasoning.
Lead author Isabelle Soulières, a post-doctoral fellow at Harvard University who completed the experiment at the Université de Montréal, commented, "Some critics argued that autistics would be unable to complete the RSPM because of its complexity, yet our study shows autistics complete it as efficiently and have a more highly developed perception than non-autistics."
Per the test publisher, “Raven’s SPM is a nonverbal assessment tool designed to measure an individual’s ability to perceive and think clearly, make meaning out of confusion, and formulate new concepts when faced with novel information. It has been used world-wide for more than 70 years.” The article, Enhanced visual processing contributes to matrix reasoning in autism, by Isabelle Soulières, Michelle Dawson, Fabienne Samson, Elise B. Barbeau, Chérif P. Sahyoun, Gary E. Strangman, Thomas A. Zeffiro, Laurent Mottron, was published online on 15 Jun 2009. You can find a review at Autism News or read the abstract for the study online.
I’m a big fan of unstructured time for kids. And it’s never as easy to schedule as it will be during the summer months. I think it can be tempting for parents to fill kids’ summer days up with activities, camps, playdates and daytrips. And, I’m not against any of these. Certainly, if child care is needed, or your child needs to catch up in summer school, these structured activities may not even be optional. But, too often, I think parents feel like they have to keep their kids busy, or they’re not being good parents. And that’s just not true.
I hope parents will take some time this summer to allow their kids to do nothing, to putter around in the back yard or the neighborhood, to lie on the hammock and read a book. It’s OK for your child to be bored, children need to learn to entertain themselves, not just to participate in structured activities. Children learn creativity from doing things on their own. They learn to make friends when they’re drawn to interact with the other neighborhood kids.
Notice that I’m not talking about TV or video games here. Again, I’m not against TV or video games. I think they can be an appropriate relaxation activity for some kids, and they are a huge part of children’s cultural world. But, screen time, whether TV, video game or computer, is still a place where your child is being entertained. There’s no need to figure out how to entertain yourself amidst the flashing lights and the laugh track.
Instead, let’s just do nothing. In honor of that, I think I’ll cut back on my summer blog posting schedule, so I have some down time too.
A lot of people ask me for info on support groups, social groups or discussion groups. Sometimes I can help them, especially if it’s something fairly common, like locating a parent support group for local parents with kids on the spectrum. But it seems like it gets tougher and tougher to find a group as the potential members get older. There are a lot fewer groups for teens or adults, and if the group is for multiple special issues it can really get difficult. That’s why I was pleased to find that GRASP is starting a new online discussion group for teens and adults within the GLBT community.
Please check out the GRASP website for info on their latest support group: the GRASP GLBT Network. GRASP defines this group as a “discussion group for adults and teens who are on the autism spectrum and members of the gay, lesbian, bisexual, transgender, queer, or questioning community.”
I’ve worked with a lot of autistic kids who are really struggling. And that’s hard on their parents too, because they worry about the future. Will their children grow up to be safe, happy, productive?
No one can predict the future, but I always want to look toward the positive side. So many successful adults with Asperger’s or autism tell of difficult childhoods. An example I recently read was in the 5/16/2009 Newsweek article on Ari Ne’eman. Ne’eman is a college student, autistic, and the founder of the Autistic Self Advocacy Network. I think by anyone’s standards he’d be considered quite accomplished. So it was especially interesting to read about his childhood in the article:
Ne'eman battles a strange kind of image problem: his critics accuse him of not really being autistic. His mother, Rina, is particularly sensitive about this. "People who see Ari today have no idea where he's been," she says. As a young child, Ne'eman was verbally precocious but socially challenged. "I didn't understand the people around me, and they didn't understand me," he says. He was bullied and ostracized—back then he didn't look at people; he flapped his hands and paced incessantly (he still does both today); he brought newspapers to elementary school as leisure reading. "I think the word 'freak' may have come up," he says. He was, at one point, segregated from his peers in a special-ed school. That led to struggles with depression and anxiety so severe he would pick at his face until it bled. I asked Ne'eman how he manages all the professional mingling he does today. Small talk makes him uncomfortable, but he's learned to play along. Still, none of it is easy. "You come out of a meeting and you've put on a mask, which involves looking people in the eye, using certain mannerisms, certain phrases," he says. "Even if you learn to do it in a very seamless sort of way, you're still putting on an act. It's a very exhausting act."
And Ari Ne’eman is just one example of so many autistic adults who are thriving, both in spite of and because of their autism. So what will happen with your child? You can’t predict, but neither can the specialists.
I do know that all kids do better with good, supportive parenting, adults who stand up and fight for their kids no matter what, and extra help when they’re really struggling, whether socially, academically, or emotionally. And every child deserves to have a parent who’s optimistic about the future.
I’m a therapist, also called a counselor, a psychotherapist, or even a "shrink", and I work with people who have Asperger’s, autism, or other ASDs. But that doesn’t mean I’m trying to cure someone of their autism. That’s a confusing distinction, but it’s important.
Many individuals on the autism spectrum are struggling with the symptoms from a mental disorder, such as depression, anxiety, or getting caught up in repetitive thoughts. Those are all things that can be treated with psychotherapy, (and sometimes other means), and often “cured” or at least managed so that the symptoms aren’t a problem.
Other individuals on the autism spectrum are trying to deal with issues that go along with their autism, such as difficulties with social signals or managing relationships. Those symptoms can also be managed through psychotherapy.
But the important thing is that in neither of these cases is psychotherapy meant to take the autism away from an individual. It’s not trying, or even wanting, to “cure” autism or Asperger’s.
I think that many autistic people don’t want to be changed. They appreciate and enjoy their cognitive strengths. They derive a great deal of pleasure from their special interests. They relish alone time. And they have no interest in becoming a social, outgoing, maybe even shallow, neurotypical.
The good news is that people can have the best of both worlds. Therapy can manage depression, anxiety, or other symptoms so they’re not a problem. People looking for more satisfying relationships or professional success can learn to adapt in the ways they choose to. And at the same time, all the strengths and special characteristics of ASDs don’t have to be erased.
You can learn more about this topic at my Therapy and Coaching for Asperger's, Autism and ADHD website or in my ezine article on Depression with Asperger’s and Autism.
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.