Teens with ASD: “Been There, Done That” Advice from Parents
The future depends on what we do in the present. - Mahatma Gandhi
When your baby is born, the sky is the limit. As all kids grow older, their personalities gradually form them into the imperfect beings that we all become, lead them to new activities, to the pursuit of new dreams and push them to one vocation or another. It's never easy for any parent to relinquish their own vision for their child's future and let them choose their own path. It can be even more difficult, sometimes excruciating, for parents of kids with ASD to give up the idea that their child will be able to achieve the "American Dream" or even keep themselves safe or live independently.
No one wants you to give up having any dreams for your child but those dreams may need to change to suit him or her. Temple Grandin's mother taught her this important thing - “You are different, NOT less.” Please remember that when thinking about your child's future. He or she may have a different future, perhaps, not less of one.
Been There, Done That
The following is a collection of "best advice" tips from those who have come before you and likely helped pave the way for your child to get the services, such as they are, when your child comes of age.
"You will no longer be dealing with a school district, but will be dealing with an agency. There are less protections for you or your child. Take a deep breath, and get ready for the universe of "your child is no longer entitled..." --- Sherry
"1. Stock up on your disguises for yourself when in public places when with your teen boy with autism and he gets that urge to whip out the toys [penis] to play with...
2. Rewatch the movie Edward Scissorhands for some shaving tips when it wasn't hard enough to cut the hair of a moving target -- now you have to deal with attempting to shave the beard of the bigger and faster moving target.
3. Your sense of humor must now be a sense of humor on steroids. See #1 for why." ---Michelle
"My higher functioning son with Asperger's has changed dramatically with puberty. Stimming behaviors have all but disappeared and his overall demeanor is far calmer and laid back. What concerns me is what is going on in his mind and emotions... that are no longer showing. At least with the anxiety attacks and stimming, I could figure out what he was feeling. Now, I am in the dark living with someone who doesn't show how he feels and cannot explain it or tell anyone either. So, while on one level you feel like you can relax some as their behavior improves, you actually have to remind yourself to pay more attention than ever. Take a very deep breath while trying to teach a boy how to shave when he can't even pour himself a glass of milk without spillage nor has he ever mastered using a knife to cut meat with. But now you're handing him a razor blade to use against his face...deep breath...in and out...in and out..." ---Colleen
"Work with your OT to get your child desensitized to the buzzing of electric shavers when they are 12 and don't stop."
"#1 = Petty theft. We stop for gas, he wants some Skittles so he takes them. I drag him back to pay and the staff, seeing he is autistic, says "That's okay." Spend some time explaining why it can never be okay then find out he helped himself to something else. Back inside again.
#2 = Boys stink more after puberty than before. Don't know how that's possible but they do.
#3 = What is that thunk, thunk, thunk sound I hear while he bathes? Better to ignore than to investigate." ---Bob
"Start early be strictly consistent and set up routines. Unlike everything else puberty comes along right on schedule. Using a disposable razor with a cap still on it allows a prepubescent boy to practice shaving strokes long before he needs to shave. When those first hairs sprout, you can remove the cap to do the shaving at the corners of the upper lip after he clears his face of the shave cream this allows him time to get accustomed to the feel of the razor pulling as it cuts hair and eventually you can turn the responsibility for the actual shaving to him. I think it took about 2 weeks of hand over hand and one nick for my son to take over. Deodorant and showering routine should be instituted as a daily routine long before the hormonal changes of puberty cause increased glandular output and funk. Hair can get especially malodorous with overactive sebaceous glands oily and stringy hair that stinks does little to improve a teen with ASDs social standing . Prell shampoo does a good job stripping the hair of oils; joy dishwashing liquid will also work where some shampoos don't. By establishing the use of deodorant, mouthwash and aftershaves BEFORE puberty sets in, it is less of a power struggle when it is needed and the teen is trying to assert some independence . Same is true for use of pads for girls. Better to introduce a panty-liner a year before a pad is needed so the battle of tactile change is one less issue when menses commence.
Parents must enforce rules around masturbation with a calm acceptance of the behavior in the correct environment. For safety, that environment should be their bedroom only. Bathrooms exist everywhere and so that should be off limits for this natural behavior unless you enjoy sitting outside the men's room for long periods of time!
For many kids puberty increases anxiety, aggression and often is the point where medications are first tried. Be sure to seek the help of a physician who is well versed in this population. Puberty becomes a time where you need to pick and choose your battles, if your teen discovers they can control their surroundings other people and the expectations of others through aggressive or destructive behaviors you will only see an increase of that sort of behavior, so pick carefully what is important and what you can live with. For some kids puberty actually is a time of great growth and progress as they develop a sense of self awareness, so it isn't all bad.
Not to be a complete downer but at about age 12 you really have to take stock of where your kid is and what may or may not be achievable. Too often schools will focus on academics and a kid may be bright and able to do grade level work or better but be so lacking in life management skills that even if they get a Ph.D. they aren't employable so it might be a better course to focus on some life skills vs. physics. Sacrificing AP courses so that your kid is functional isn't a loss. We all know that Education is lifelong but we're only around for so long and the lack of life skills is what will trip our kids up in the long run. It's hard to get schools to address but worth the fight to get those issues addressed while your kid is still entitled to services . Adult services tend towards care taking, not independence, and most HFA kiddos won't even be eligible. All A's feel good but won't count if your kid can't navigate the world." ---Sue
"Don't assume that just because your child has autism that it means that they can't do anything. Set your expectations high and your child will meet them, with your support, help and love. Accomplishments may be slower but they will be sweeter when they come along, and you will cherish them, as you should. If you never set any goals for your child, they may never accomplish anything. Shoot for the stars and watch them soar!"
"At one of the DAN! conferences about 10 years ago, a lady from England spoke about diet. I asked her about aggression because a local boy 1 year older than my son was on meds through puberty for aggression. She said on diet, no aggression. Except for when chelating lead out, she was right. When my son reached puberty & I was finding mysterious wet spots in odd places in his room, I told him two things come out of his privates, one is pee, the other has to do with marriage and babies, and what he did in his bedroom and bath was his business but ONLY THERE. Not much of a problem since." ---Lorilyn
"Don't ever believe anything the schools tell you. Fight for it and hopefully they at least can help, but never plan on them doing anything useful, you've got to work on independence yourself! We just had Peter Gerhardt do a seminar in Ann Arbor at the end of August and he totally echoed this. There is a good book called " Steps to Independence" that is a good summary of how to do task analysis on common stuff your kid should be able to do, and how to teach it step by step. We started with my older son about 2 years ago (age 12) and he can do so many things now with just a checklist. Schools do not really do this, it is something you have to push or do yourself, at least that is what I have found. You need to be brutally honest when assessing your kid too - the social and independence skills are way more important in the long run." ---Barb
"Puberty has been hard for my son. Lots of aggression, but mostly because of the poor staff training he gets from his agency, and the fact that I am BURNED OUT! Not a good time to start a blended family -- the stresses of that endeavor alone on top of the stresses of autism have been very difficult. Fortunately we have worked through most of the issues, and the older girls are off at college. What I wish I knew back then? Don't try so much stuff, be consistent, be understanding, follow your gut when you think you are getting bad medical advice. DON'T EVER GIVE UP ADVOCATING FOR YOUR CHILD! Listen to people you trust, ignore the ones you don't. Make sure that those around you know that you ARE an expert. Bumps in the bathroom? Heck, if it only happens there you are in good shape. (We hear the bed squeaking, but I'm ok with that!) I never made an issue of it, and let's face it, boys need to let loose.
Have a tough skin. Tonight we went to the kids section at Barnes and Noble and looked at toys meant for 3 - 6 years old. My son is 17-1/2. Let it go, and focus on the things he CAN do well. My son likes order, and he's good at putting things in their places, making sure doors are locked (usually the ones that keep him from getting into stuff he can't have) etc. And he understands things I don't expect him to. He may not be able to match numbers to piles of objects, but he knows how to behave at a funeral." ---Cindy
"One big word of advice. Start early. If they are still in school and will be transitioning into a vocational training program, don't wait until they reach the transition point. Start looking at the programs and facilities two or more years earlier. If they will be transitioning into a day program after school, start early there too. Many of these have a waiting list, so apply well ahead of graduation time, whether it is 18 or 21. Regarding adult services, whether it is a school district or an agency for adult services, always ask for the exact source for entitlement to the program or service. They just love to tell us that "the law says" but in most cases they don't know what law. Usually, it is just local policy or whatever they can get away with. When they say the law says, always ask "What law?" Chapter and verse." ---Rick
"The main things parents need to know - and many do not - is that services are not MANDATED after they leave IDEA services. They can be Eligible, but that does not mean they will receive them." ---Chantal
"School districts tend to think they're 'cured' when they 'release' them at age of 21, but the advocating, empowerment of 40+ years has just begun." ---Sally
"Know that the criteria for ADA requirements is much stricter than IDEA so if you have a child with Asperger's Syndrome or HFA, they may not qualify for SSI, or anything else, like they did under IDEA when they leave high school. Be prepared. When your child is 17, get quantitative evaluations to show how your child's disability affects his or her ability to access the needed services or activity, and get them in writing."
Do everything you can for your child when he or she is young. The sooner you get them healthy, the sooner they can learn and grow. If they are healthy, they can benefit from whatever treatments you choose to use. You can treat them later but you'll never get that time back to make the biggest change.
Learn who is supposed to pay for what so you are not paying for everything yourself so you don't go broke until you have to." ---Holly
A special thanks to my editors: Jenn, Sue, Nancy C., Alison, Julia, Nancy H., Barb and Luana.