Growing Up on the Spectrum

by Lynn Kern Koegel

  The primary purpose of a guardianship is to protect an otherwise vulnerable adult. It always takes away some of the rights of the person with the disability, and shifts that decision-making power to a guardian or conservator.

  One question often not asked by the attorneys or courts involved is “How will the loss of autonomy affect the person with the disability?” You need to be asking yourself that question. While some individuals lack the understanding to even be concerned, I have had clients who are truly devastated by the loss of their rights. Sometimes it is hard to predict what effect it will have on your child, but it is important to think about. There is a strong natural tendency to overprotect our most vulnerable children. Recognizing that natural tendency while making the decision about whether to seek a guardianship will help you make a better decision.

  The process of guardianship varies widely from state to state, so I cannot definitively talk about procedure. Most states do require some sort of ongoing reporting to the court, often annually. This can be both time-consuming and costly, and you should discuss those issues fully with your attorney.

  The most common interactions that lead to questions about guardianship are with schools and health-care professionals. Many appropriately allow you access to information and to participate in decision making for your adult child. Federal education law (IDEA) and health law (HIPAA) specifically authorize a parent to do this. However, some practitioners (and regrettably their attorneys) are misinformed about this area of the law, and will make it difficult to proceed without a guardianship.

  Some have argued that providing information to the parents of an adult person is a violation of the privacy and autonomy of the disabled adult. Quite the contrary, this allows the disabled person to avoid a guardianship, and maintain legal autonomy, while ensuring they continue to receive a free appropriate public education (FAPE) and appropriate medical care through the advocacy of their parents.

  You should strongly consider a guardianship if your child has or is likely to have contact with the justice system, either as a victim or an alleged perpetrator.

  There are alternatives to guardianship. If your child is relatively articulate and understands what it means to designate an agent, having him sign a power of attorney may be helpful and appropriate. While this will not protect him, it will allow you greater ability to advocate for him and to help to manage his assets.

  In addition, all states have a process for surrogate decision making, either by common law or by statute. So if your child cannot make an informed medical decision, there is a hierarchy of persons designated to make that decision on her behalf. In most jurisdictions it falls first to a spouse, then adult children, then parents, then siblings. Since our disabled children often do not have spouses or adult children, parents often make medical decisions with full authority, but without legal guardianship.

  Guardianships should not be done lightly. While it may be appropriate occasionally to do so solely for the comfort of the parent, as a general rule you should consider a guardianship only if there is truly some need for the guardianship, such as some risk of abuse to the child. Many parents have expressed to me their concern that if they don’t become guardian, the state will step in and begin making the decisions. My experience is that the state does not want to do that, and only steps in if there is a real problem. When that happens, even being the legal guardian will not insulate the parent from state action.

  What questions should a parent ask a lawyer about special needs in estate planning?

  You want to find an attorney who is knowledgeable and comfortable around persons with disabilities. Ask about their experience with those with autism. Ask about their experience with SNTs.

  What sources of state/federal funds are available for children with special needs?

  The primary source of income for the disabled is Supplemental Security Income or SSI. It has the same qualifications as Medicaid, and requires that your child be incapable of meaningful work. (I know it is much more complex than that and does allow for some work, but essentially this is what it comes down to.) These programs are funded mostly by the federal government, but are administered and supplemented by the states. The states vary widely both in the amounts provided and in the details.

  SSI and Medicaid programs require that persons with disabilities have income below a certain level, and that they have just a small amount in assets (usually a few thousand dollars). Certain items are exempt from these limits, including a home, a car, and most personal property.

  SSI is meant to be enough to live on. When your child turns eighteen, he may be eligible for SSI. Some may be eligible prior to age eighteen if the family is of limited means.

  Because SSI is meant to cover all living expenses, if your child is living at home, you should be charging room and board. You should discuss how much with your attorney, because the regulations vary. If the child is not living at home, and SSI assistance is not enough, Medicaid picks up the difference.

  If either parent is disabled, retired, or deceased, your child with a disability may be eligible for disability benefits based on the parents’ account. This is known as SSD, and knowing the benefit source for your child is important. The amount from SSD may be greater, sometimes much greater, than SSI. And it does not require that you have limited assets! Keep in mind that if your child also needs Medicaid, the asset and income limits will still apply.

  Can you give any tips about finding a lawyer who specializes in this area?

  Because guardianship law is also focused toward the elderly, the members of the National Academy of Elder Law Attorneys (NAELA) is a good place to start. You can also ask your local advocacy organization for a referral. Of course other parents are often an excellent source.

  Frequently Asked Questions

  There’s no question that my son will be his sister’s guardian after we’re gone. There are only the two of them and he’s always been very loving toward her. But I don’t want that responsibility to be too onerous. How can I arrange things so he can manage and oversee her future needs without allowing those responsibilities to interfere with his life on a daily basis?

  It’s wonderful that you have someone in your family who is willing and able to care for your child. You should be able to set up the daily arrangements and just have your son oversee the program. If you have any savings, you might want to consider financially compensating your son for doing this, because it will take some time and effort on his part. Also, some states will provide payment for individuals who provide caretaking in their own homes. Talk with your son to determine just how much time he’s able to provide, and work around his schedule and within his capability. Remember, the more you arrange ahead of time, the less he’ll have to do when you’re not around to manage things anymore.

  My grown son is on the spectrum and has had occasional violent outbursts that have made group living arrangements difficult. We don’t own our house and can’t afford to buy one. He lives with us now, but we’re getting old and it worries me. Who will take on an adult with violence issues? I don’t want him to end up somewhere scary and horrible.

  You’ll need to address this right away. It should be your top priority. If your child has had disruptive behavior for a long time, it will likely take a long time to eliminate. One of the areas that’s challenging is when there are low-frequency/high-intensity disruptive behaviors. This is difficult because they’re not predictable. I work with a few young adults who have major tantrums a few times a month, and because they’re adults, the police end up being called in if it happens out in the community. For these individuals, I’ve found that it’s helpful to use self-management, but with the goal of accomplishing so many days in a row without disruptive behavior. We’ve started with two days, then three, then four, and so on until the individual can go for a week at a time without disruptive behavior. And don’t forget to analyze the cause of the behavior and continue teaching the replacement behaviors.

  We have some money t
o leave to our kids but I’m worried now that if I leave equal amounts, my daughter (who’s on the spectrum) will lose all of her share to costs that the state would pay for anyway. But I don’t want to leave her penniless while her siblings (who can support themselves anyway) have so much. How do I make sure she has money if she’s in desperate need without jeopardizing state funding?

  This is a concern and will require some planning with a disabilities attorney. Again, there are ways to leave money to your child to enhance the services she will receive as an adult, but careful planning is necessary. And remember to be fair. Have a heart-to-heart talk with all of your children to determine who is willing, able, and motivated to tend to all the important aspects of your adult child’s life.

  SECTION VI

  Improving Daily Life

  1. Introduction

  So much is going right for us that I feel guilty complaining at all. We’ve got all the big stuff under control—my son is doing well at school, he has a few friends, he even has a weekend job—but there’s still something about him that’s not like the other kids. Some of it is how he looks, some of it is how he behaves. I’m worried that it will affect how people view him as he moves out into the world. I don’t want to change him in any fundamental way—I’d just like to “fine-tune” him a little. How can I help him get control over his appearance and his behavior?

  CLAIRE

  Years ago, we wanted to go on a little boat tour while we were in Hawaii. The family boat was full, so they put us on a “sunset cruise,” which turned out to be code for “drinking party.” My kids were the only people under the age of eighteen on that boat. It could have been disastrous but it was actually incredibly fun—everyone was nice and a school of dolphins cavorted right under the see-through deck in front.

  As the only young ones on the boat, our kids got a fair amount of attention. Andrew was probably about eight at that point. He was clinging to me nervously a bit on the boat, but overall doing fine. A lovely older couple kept smiling at us, and in the way that these things happen, pretty soon the wife and I were chatting away. She mentioned that they had a grown son with special needs. I saw that as an opening to tell her that Andrew had autism. “Yes, dear,” said the sweet older woman. “We’ve already figured that out.”

  I still remember feeling slightly taken aback that strangers, who had barely interacted with my family, could see it so quickly, especially because Andrew seemed worlds away from where he’d been just a couple of years earlier. Now that I think about it, I’m sure it had to do with the depth of their own experience. Those of us with kids who are on the spectrum can spot children with similar behaviors from a mile away. I didn’t particularly mind that they knew—I’ve always been proud of who Andrew is and to me there’s no stigma in the diagnosis, just some delays and challenges that need to be overcome—but it did make me realize that he was noticeably different from other kids, even to a casual stranger’s eye.

  As Andrew has grown older and has expressed the desire to fit in more easily, I’ve been wondering what it is exactly that identifies a kid as having special needs and how to help him overcome it.

  The easiest area to address is the superficial one: appearance. Inattention to hair, clothing, and grooming can all suggest a kid who’s not as socially tuned in as others. But behavioral issues are trickier. Although older kids and young adults on the spectrum are less likely to have tantrums or to self-stimulate in public than small children, they may have other behavioral quirks that people notice (like talking about the same subject ad nauseam). We parents work and work on stuff like that, reminding our kids to stay aware of their conversational and social obligations.

  It’s good to be different when it’s a choice you make out of strength. And so much of who Andrew is is better than other kids—he’s kinder, more responsible, more obliging, more polite—and I don’t want to change any of that. But when he’s upset because other kids at school call him “weird,” I’ll do whatever I can to help him fit in.

  DR. KOEGEL

  Sometimes it’s the little things that make or break a job interview, first date, or new friendship. I was reviewing a paper for a journal recently, and the author had written a full thirty-five pages on all the social difficulties of kids on the spectrum—without any suggestions about how to help them. That one was an easy rejection. We all know that some kids on the spectrum may have lingering social problems. That isn’t a surprise. But while there is an abundance of literature on ways to help them succeed academically, how to teach them to communicate, and how to modify behavior, far less is written on how to help them socially. In the grand scheme of things, it’s a relatively new area, and even though there are some fantastic researchers out there working to improve socialization in our kids, there isn’t as much attention paid to this area. Not just with kids on the spectrum, but with all kids.

  We do know, unequivocally, that including kids on the spectrum with typical kids greatly improves their peer interactions, but there are still far too many programs that exclude these youngsters. And I’ve been to many schools that are great about including kids on the spectrum in regular education classrooms but, unfortunately, they still let them roam the school yard alone at breaks.

  Fortunately, we are aware of some strategies to help make your child’s daily life easier, more enjoyable, more manageable, while at the same time helping him or her become more sociable. And if you keep working on these areas, there will be a higher likelihood that your child won’t develop other issues, like depression, which we often see in adults who don’t have a rich social and leisure life.

  2. Walking Out the Door Looking Good

  My daughter is on the spectrum and at an age when other girls are spending tons of time thinking about what they wear and how they look. I’m not a particularly girly-girl woman, and always thought I’d discourage any daughter of mine from spending too much thought and money on superficial things. Now I find myself wishing my daughter would pay more attention to keeping her hair clean and her clothing attractive. She doesn’t seem to care or notice that she looks unkempt. How do I get her to care?

  CLAIRE

  Today was the first day of summer and so I planned a shopping expedition with the kids to get the various items we still needed for trips and camps and stuff like that. My three youngest were all excitedly listing the things they were hoping to find and purchase, but when I asked Andrew if there was anything he needed, he shrugged and said, “Nope, I’m fine.”

  I wouldn’t say it was an inaccurate statement, but it was a debatable one. He has enough clothes to get him through the week, and they’re not ragged or anything, but he does wear the same few pairs of pants and handful of T-shirts over and over again—and his dad and I picked out almost all of them for him in the first place. He’s always let me choose his wardrobe, which is great in a way—I can pick up a pair of pants when I’m out shopping and not worry about whether or not he’ll approve of them—but his younger brother has shown us that teenage boys usually demand a say over what they wear in public.

  Still, this stuff is easier with a boy, I suspect, than it would be with a girl. Even though we know some sharp-dressing budding metrosexuals, teenage boys in general are a fairly motley crew, and as long as I’m buying clothes that fit, at stores that have reasonably up-to-date styles, Andrew doesn’t stand out in any way. But given the way the high school girls make me aware of what a slob I am, as I slouch around in my old jeans and T-shirts, I have to assume it would be much tougher for a girl who wears any old thing to fit in at this age.

  As the parent of a kid on the spectrum, I’m always having to rethink my natural instincts (in this case, being the kind of mom who says, “You don’t need to look like the other kids and it’s too expensive to keep chasing after each new fashion”) and play a different, slightly uncomfortable role (“You know, I’ve noticed a lot of the other boys are wearing skinny jeans—you want a pair of those?”). The traditional teenage battle when the kid pushes for m
ore stuff that the other kids have, and the parent says no, gets turned topsy-turvy when your kid has autism. There’s a wonderful antimaterialistic side to it all—until you show up at a school event and your kid is the only middle schooler wearing Velcro sneakers.

  The odds that you’re going to make your kid on the spectrum really invested in clothing or appearance are slender, but that doesn’t mean you can’t help make him look better. It just—like everything—requires a little extra effort on your part.

  DR. KOEGEL

  My sister and her husband recently returned from China, where they adopted a beautiful three-and-a-half-year-old girl. Our oldest daughter was fortunate enough to have her finals fall on the right days, so she was able to accompany them on their exciting trip. One of the things she commented on when she returned was the common “squatty potties” they have in China. Instead of sitting, you squat and relieve yourself into a toilet that has a hole at ground level. Some people argue that squat toilets are, in some ways, more hygienic than seated toilets, and others argue that they aren’t. My point is that while most cultures understand the importance of good hygiene in decreasing germs and disease, practices vary considerably from culture to culture, home to home, and person to person. Some parents insist on covering the seats each time their child is placed on a toilet, others just wash their child’s hands at the end. While I gave my own kids daily baths, I had friends who bathed their children much less frequently. One girlfriend of mine, who was a medical doctor, gave her kids weekly baths. The other days she just washed them off with a sponge. I have a friend who takes at least two showers a day, and sometimes three. I work with students who never put on a bit of makeup and others who look as if they’re walking advertisements for Maybelline cosmetics.