Independence: The Right Goal for Kids with Autism?
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Both young men were not only typically developing - they were advanced placement students in high school with extra-curricular activities to impress even the pickiest college admissions officer. Both were admitted to competitive colleges. One not only made it through a college honors program, but was admitted to a combined masters/Ph.D. program in genetics.
Today, both of these young men are in their early twenties. Both are living in their parents' homes. Both are "underemployed." Neither knows where (or when) he is going. Neither is living "independently."
If kids like these are back with mom and dad, how probable is it that our children with high functioning autism or Asperger syndrome will fly off at the age of 18 or 21 - with the skills to successfully manage not only their own lives, but their own households?
Back 100 years ago - or even 70 years ago - no one would expect a single young man (or woman) to simply take off and run their own establishment at the age of 18 (or 21). Certainly, no one would have expected a single individual to not only bring home the bacon but also... manage shopping, cooking, cleaning, bill paying, taxes, insurance, social interactions, selecting clothing, putting together interior decor, purchasing and driving a car...and all the other details that go into "independent" living.
Even when I was a kid, dad may have gotten himself dressed in the morning, managed his job, and made it home at night - but no one expected him to also shop for food, figure out what to cook, prepare the meal, clean up after the meal... and also remember to take the clothes to the dry cleaners, make a deposit at the bank, be at home for the plumber, and make sure the car got inspected before the deadline.
Today, though, we measure our success as parents by our children's ability to manage what used to be two or three roles - all at the same time. If they can't, we feel that we (or they) have somehow failed.
It's incredible that ANY young person can just learn to manage all those disparate details on their own with virtually no direct instruction and often very little coaching. Yet over and over again I hear therapists and parents say that their primary goal for their child with autism is "independence."
While I think it's terrific for young people to actually achieve independence, it seems to me that it IS an achievement - and shouldn't be an expectation. Given how few life skills are taught in school (beyond basic hygiene, sex education and driver's ed), it's extraordinary that anyone can make it work.
As I look at the "life skills" that are taught to our children with autism, I can't help but wonder whether our goals are in line with our educational plans. Sure, it'd be great to have our children take on all the complex, challenging chores that make up "independence." But across the board, for typically developing AND special needs children, we are failing to teach the skills that go into independent living. Where are the classes that teach kids "yes, taxes really ARE due on April 15th and here's how to calculate what you owe?" How often do teachers or parents sit their kids down for direct instruction on "yes, your car does need to be insured, the oil must be changed, and inspections are mandatory"?
Independence is, of course, an ideal. But what if my son, like my friends' typically developing children, doesn't manage total self-sufficiency when he "should"? Somehow I can't envision myself as a failed parent if my son with high functioning autism chooses to live with me until he's thirty (or older) - or needs a helping hand as he figures out the details of daily life.
In fact, so long as he's doing work he cares about, feeling good about himself, and helping to keep our household running, I think I'd be perfectly happy to have him live here as long as we're around... and inherit the place when we're gone. By then, I hope, he'll know what he needs to know about keeping the home fires burning (safely!). And since he'll have been living in the same community (that's our plan) for decades, he'll have a community of people around who know him and whom he can call on if the IRS sends a confusing letter.
Quite honestly, that seems like a great way to stay close... even if it does seem like a 19th century style of parenting!
Comments
One of the most sensible posts I’ve ever seen.
Interesting photo to include in the article. “Confused”.
Well thought out and written article, I myself have aspergers and others need to realize we are all very different from on e extreme to the other.
Can be so unorganized, to very over organized. I was one of the very over organized people, but still found moving from home very stressful as did not fit into the stereo type perceived “:norm” try living in a shared house when every time someone moves a cup, you feel the need to put it back in place!
So many parents arec made to feel bad because there children do not quite fit into the box, others exspect us to cram them in, but it just does not work.
I would rather have a good relationship with my aspergers teenager, than give him a hard time for not being like all the others and maybe as helpful as some other children. I also would be more than happy to help and support my wonderful son for as long as need be.
Please do not judge other situations or styles of parenting if you do not understand at least 90%. There are so many wonderful aspie.autie parent who are so supportive, and its about time someone recognized what a great job they were doing, instead of wanting to criticize.
It can be so hard for parents who are on the autism spectrum themselves, firstly they usually have been told they are wrong and put down all there lives, then put down again for not parenting the way others do, its not surprising that a few of them get damaged along the way, but some of them and our children do survive and if allowed and understood, embrace and add to the already wonderful diversity of this world.
Aspergers Parallel Planet…
I’ll tell you, Lisa, after having my son four months ago, I’ve started to think…”You know, it might not be so bad to move back home with my parents!”
I couldn’t convice my husband, though.
I understand his point, but I can see the benefits of multiple generations sharing a home: shared chores, bills, children get to play with their grandparents, etc. To me, if all parties are contributing in some way, there’s nothing wrong with it.
Nicole Caldwell, M.Ed. of www.PositivelyAutism.com
This is a very timely topic for us. I have been feeling pushed, not directly but by implications during “independence” discussions, to consider the possibility of our son living on his own in a few years as an early-20’s Asperger kid with a lagging maturity level in general and scattered executive functioning at best. For cryin’ out loud, I myself lived at home until I was one month shy of 30 (at which time I moved out and got married to a man who had done the same!). And I have to admit, to my shame, my mother didn’t ask much of me and I took advantage (in retrospect) of that. I know that if something were to happen to me, my husband would hire someone to cook and clean and maybe do laundry. He not only doesn’t want to do those things (he could learn; he’s not used to it at all, though) but also works long hours and really shouldn’t have to if he can at all afford to hire someone.
I have often thought, if only we can make sure that he learns in a safe and comfortable environment how to do all these things/skills with minimal help, then he can inherit the house and live his days, hopefully, in the home he grew up in and where he is within walking distance of most daily living needs and can still have his beloved pets, etc.
I guess what it comes down to is setting *realistic* independency goals for our kids–with their input. There are some things that they are simply always going to need help with, for whatever reason, and as parents, it behooves us to recognize what those things are *now* and make sure something is in place to help them with it when we’re gone, be it funds or advocates or both.
Thanks for writing this!
nj
The development of “independence” is a process, and not one that occurs along the same timeline for everyone, whether they have autism or not. As a parent, I have the goal of helping my children toward self-sufficiency and independence, but I don’t believe that process stops at a certain age. Even when we reach the chronological age of adulthood, we still need trusted mentors and guides to help us on the journey of life. Like so many things in life, the development of independence is a journey and not an endpoint!
Nicole
My soon to be 21 year old son lives independantly in our home and at the moment that is good enough for me. He talks about moving out and he aleady knows where he would like to live. In fact he is busy planning his life away from home but I do not expect it to happen anytime soon because the planning stage with my son can last a very long time. We will not be pushing him out before he is ready to go. Here in the UK kids are staying at home for longer now than ever before so at the moment he is not unusual but even if he was it would not bother us at all.
I’m an aspie and I left home the day after my 18th birthday. It was actually easier than living with my parents because I needed the time, space, and privacy independant living afforded me to grow and develop. At home, I was being constantly overloaded, but living by myself I gained the peace and quiet that was essential for me to fuction and learn. Like many aspies, I have a high intellect and think logically, and these abilities helped me meet the challenges.
Every aspie is different of course, but I don’t think in general that we leave home sooner or later than neurotypicals.
All we hope for our son who has autism is that he will be happy and healthy, loved and loving and safe when we are gone from this earth. That is a thought that motivates and terrifies us. Those are the reasons why we want our son to be independent one day and not vulnerable to other people who may be unkind or worse. How do people handle that very real concern?
Good Morning! I fel I was compelled to come here this morning and I have been blessed. My husband and I have been discussing our son’s independence for a couple of years now (he is 13 and has Apsergers). The common thread I hear with parents is that we want our kids to be okay, whether we are around or not. Your comments have really calmed my nerves, especially the ones from teen adn adult Aspies. I have been so caught up in the future that I admit that I sometimes neglect to focus on his here and now. I do have a question for the Aspies - how did you learn social skills? My son is going to middle school this coming school year and I have explained to him that he will encounter a lot of new people that won’t understand all of his behaviors (he has problems with personal space and recipricol conversation, among other difficulties). I have been emphasizing that he needs to be mindful of his personal space and talk to people about what interests them as well. Do you have any advice for me? Also what skills would be helpful to teach him as far as independence. Thank you in advance for your help. Everyone, continue to be blessed.
I agree with these concerns of independence. Our kids are delayed and sometimes things come later but things like driving is pretty risky …for anybody.
My son just graduated from high school, with a diploma. It sounds good but he is no where near where the nuero typical kids are. He is not driving, he did not go to the prom with a date…on and on.
I insisted every year in high school to include life skills but what I heard from administration was that since my kid is working to graduate with a diploma track he doesn’t get “life skills!”. “What??” That to me is insane and something that absolutely needs to be changed!! They told me I would have to choose!!
My son did not receive any help in looking to graduation, not for scholarships or even transfering to college. Matter of fact my son got straight A+’s in choir and did not receive a scholarship like the three other top singers. He was definitely left out. I know things are slow moving in understanding but I feel we have no time to waste. Parents, we need to speak up and help make these changes happen for our kids! Without us working together to make these changes no one will make them for our children. “Be the change you want to see in the world”…
Taking a long time to achieve independence is fine with me, and I am happy to support my young adult sons as they slowly make their way to this goal. What is not fine with me is when they refuse to begin the journey. When a young adult assumes he/she should have all the privileges of independence with none of its responsibilities, it is oppressive, sometimes even abusive, of the parents who make such behavior possible. This is when parents can begin to set limits that move the young person in the direction of independence.
I also thought this was a very well-thought out article. And I found it comforting. My son is 14 and has been stressing about what will happen when he turns 18. He hears all his peers talking about high school, graduation, college, moving away from home and it SCARES him! For a long time he felt he would be booted out of the house after graduation and he kept these fears inside for far too long! I was devastated that he had lived with those fears for so long and didn’t talk about it. We have tried to calm those fears and let him know that if he does ever move out, it will be because he wants to and not because we kick him out. We have even sought out a therapist who is helping him deal with this issue.
I also agree that our school districts have to start offering more life skills training. This is essential for ASD children and young adults. We also have the task of figuring out if it is better for our children to graduate with a typical diploma or a special ed diploma as future financial assistance may hinge on this. So much to think about and plan for. Sometimes just taking it “one day at a time” is the best way!
Thank you for writing this article. This gives me much food for thought for my 6 year old diagnosed daughter.
I’m with you Lida. Of course, my son is not high functioning; he is low functioning. But even with that, therapists keep pushing me to think about independence for him, even though they admit that group home living might not be a good option for his personality. It’s insane. Meanwhile, my 16-year-old typically developing son isn’t expected to plan his whole life now — but we keep being warned we have to plan out Jalen’s at fourteen!
We still feel we don’t know how much he’ll grow and change, and so we feel good about having him home as long as he wants — especially since he’d be expected to join some kind of group or foster care anyway. Why not stay with us — which at this point he definitely wants to do.
Interestingly, I just posted a journal entry on a similar topic. I have worked as an instructional aide in Adult Transition for the past few years and as an aide overall for 8+ years. Here is my journal entry…
What Is Independence?
I have found myself thinking about this a lot lately. My job for the past eight years has sometimes been called “Independence Facilitator” as well as Instructional Aide. I used to think that this title was unattainable with some students knowing that they would never be on their own living in their own house. Now that I am in the Adult Transition class, I see the tail end of what our district offers to students with various challenges prior to their graduating from our district. We work on life skills, functional skills and the kids hold a wide variety of jobs on and off campus. We offer our students pride in their jobs and their abilities. So, some have asked me, will any of them ever really be independent? Well, I ask myself that question a lot and the answer is another question…WHAT IS INDEPENDENCE?
I used to consider myself an independent adult, but here is just a brief list that proves that in reality I am not necessariy an independent adult:
1. I NEVER cook dinner meals 7 days a week. I am dependent on various restaurants in the area to make my family’s dinner life complete (trust me, they are happy about this choice)
2. I am one of the only ones on my block who mows her own lawn, but I can’t edge it so I “depend” on my husband to do this.
3. I can flush a toilet by myself, but if it doesn’t flush properly, I am dependent on my husband to figure out why and if he can’t we are dependent on our plumber friend to solve the problem.
4. At work, I am able to wash all the dirty laundry at the school, but I am dependent on a student to carry it since I have had back surgery recently. By the way, they also do the wash…and fold better than I do!
5. I can make sure I take proper care of my daughter, but if I can’t figure out a health issue, I am dependent on medications or doctors to help me in this area.
6. I am able to wash the bed sheets, but I am dependent on my husband to put them on the bed in “military style” the way he likes it.
7. I am independent to push the sprinkler button to water our lawn, but am dependent on my husband to fix any broken sprinklers.
8. I am able to balance the check book and all financial matters in our house, but I am dependent on the bank doing their part to put the money where I want it.
9. I can see there is a spider on the wall, but I am dependent on my husband relocating it to the backyard…okay, or smooshing it
10. I can take the trash cans out to the curb every Wednesday night, but I am dependent on the disposal company to get it to the dump or wherever trash/recyclables go.
I could go on and on, but in reality none of us is truly independent. In all actuality, life would be kind of boring if we could do everything. We all live in a community and rely or DEPEND on those in our house, school, family, job, grooming, chores…and all the little and big things in life.
So, if you find yourself reading this journal, you might say, “What the heck is this lady’s post about?” My point is that for those in this world who are challenged by autism or other issues in life, we all can be independent to some degree, but we ALL need to rely on others for things that challenge us or things that just aren’t our cup of tea. Being independent is different for all of us. For some, it will be living with their parents and going to a day program to attend a much needed job. For some, it will be being the sole resident in their own house. For others, it can be living in a group home with others who will assist and champion for them. For some, just being living examples of positive attitudes in the shadow of major challenges is truly inspiring. So my challenge is to put on new lenses of love and see the potential that we all have to be whatever “independent” means for each of us…not just a narrow view of independence that the world sometimes portrays.
Joanna Keating-Velasco, www.AisForAutism.net
A Is for Autism, F Is for Friend
IN HIS SHOES - A Short Journey Through Autism
i thihnk of this everyday and it scares me. if something happens to me what will happen with my 9 yr old son? it’s funny how the school always tells me to let my son do things for himself, but their only concern is getting their paperwork completed and getting the special ed kids reach the iep goals. i also asked the teacher what about life skills. she responded what’s that and where did i get that term from. either she really didn’t have knowledge of life skills or just made me feel stupid. what do we do about these concerns? the school needs to change things around or they should open special schools around to accommodate these concerns.and help us with the future for our loved ones. so that have a safe haven for when the parents leave them.
My seventeen year old autistic son is going to overnight camp for the first time this summer. It will be the first time he has been away from family for more than one night. One day my son won’t have his mom or dad and he’ll need to learn how to depend on the world for his living. Helping him gain independence from his family is part of my job as a parent. My hope is that my son will be depending on the world while he still has his parents as a fall back.
My son and daughter, 10 and 8 respectively, both talk about the future and what they want to be when they grow up. It is enlightening to hear them talk about what college they will go to and what kind of car they will drive and they even talk about who they are going to marry! My son has even picked out his future bride!! Anyway, I am absolutely terrified of what the future holds for my kids and how they will function in society. I would never let them know how terrified I am, but I can’t seem to calm myself about this. I don’t want to be too overprotective, but if they have to live at home for awhile then so be it. I know it will make me happier, but knowing when to “let go” will probably be a challenge for both me and my son and daughter. I guess we will take one day at a time hope for the best. That’s all anyone can do I think.
I agree wholeheartedly that life skills must be taught and should be taught in school. However, I am wondering if many of these parents are missing opportunities to take advantage of main stream classes available in their schools that do teach these essential skills to all students. Gone are the days of “home economics” for girls only that teach cooking and sewing. In Arkansas “HomeEc” has morphed into essential skills classes. There are many classes available to high schoolers that teach personal finance, family living, parenting, and career management. Look at the course catalog for your school or check out your state’s department of education web sites. I agree that young adults with autism may need more or refresher courses but there are some real advantages to taking the mainstream classes in HS. First, kids with autism see that EVERYONE, even typical kids, struggle with holding together the demanding lives we are dealt. Also, they learn essential skills in MAINSTREAM environments and avoid the stigma of taking “special” classes. If your states do not offer these classes you should talk to the Workforce Education Department (Vocational in some states) about forming them - or perhaps the traditional HomeEc classes need to be brought up to date. Good luck to all in this area - I am crossing this bridge with my son and many of my High School students with Aspergers.
My son Tom is 24 and just graduated from College with a degree in accounting. He is preparing to take the CPA exam. Oh, yes, and he has autism. (Lined up his toys, stopped-talking kind of autism).He will be moving into his own apt at the end of this summer. We have done many, many things over a period of years to make this happen- in fact we are working on a book as a family to share the information about how to help someone be ready and get ready.
We did some really novel things, pushing the envelope, like having an IEP at the junior college (you must be wondering how we did that!) We made a case and had a responsive director of special ed who knew that just because someone’s calendar age says one thing, that does not mean that the person is able to meet the demands of that age, socially, communicatively or even in a practical way. One of my biggest concerns is the pressure put on families at high school age to choose EITHER an academic track OR a functional track. I work as an advocate and I am already seeing that kids who are able academically often have their social, communication, developmental and practical needs neglected on the diploma track. I made a case for BOTH types of services and I believe that is why my son has been able to be responsible for his own success in the last two years. My best de-stressing advice for parents: Turn off the clock and toss the calendar. Accept that people on the spectrum develop on their own timeline. Realize that they may need additional time and support, as they always have, to reach particular milestones. Asking people to meet “age demands” before they are ready is a recipe for frustration.
I am all in favor of getting them ready! I also realize that all is not in place to do this with ease and we (the collective we, those with the insight into the need) will be helping to create new systems and programs and asking service systems including education and jobs to respond to new types of need.
Nine years ago when the housing market was low we bought Tom a two-bedroom condo. Renters have lived there since 1999. We did not know who would be in the second bedroom when Tom was ready to live there- a paid person, a mentor, a friend, a girlfriend? It has given us all GREAT peace of mind to know that Tom would have his place and whoever was in the second bedroom did not matter, but would be the right choice for his happiness and success. At the moment it looks like it will be Tom’s best friend in the other bedroom, another terrific young man on the spectrum who does not want to move in until he can pay his own rent. All the best, Emily Iland co-author of Autism Spectrum Disorders from A to Z.