How much help is too much help from a parent when your child with autism becomes an adult?
First of all, the term “adult” is very broad. Reaching the age of eighteen or twenty-one makes them legally adults. However, for adults with Autism Spectrum Disorder, delays in development and maturity can be significantly slower than their typical peers.
According to a study by the National Center for Biotechnology Information, U.S. National Library of Medicine in November 2009:
“Because of delays in ongoing social development, some of these individuals may attain educational, independent living and relationship goals, but reach them a decade or more later than typical for the general population.”
In the journey with my sons, I found that too much help could be toxic (and I can be a real helicopter mom. I'm constantly working on it.) Too much help can delay them even further from becoming independent.
Think about it…
Why do things for myself if mom will do it for me?
Why do I need my own money if dad will give me everything that I want and need?
I will never forget the first time Kendal had to take money out of his own account, for his spending "wants." He was so angry with me!
Transitions in life are hard for most of us. The responsibilities that come with adulthood can be overwhelming. Working, going to college, deciding what to do with your life, budgeting money, planning how best to spend your time. The call for a social life that looks like what your peers seem to have can be especially difficult for those on the spectrum.
I have also seen examples where not enough help can leave them sitting in the same place for far too long. Once you fall too deeply into depression, it gets even more difficult. Then because they are legally adults, we can’t exactly make them conform to get mental health services.
Let’s face it, often we (parents) are the last people they want telling them what to do. In their heads, they are adults and should be able to make their own choices. I get that. In our experience, the help can not always come directly from me or their father. We need a whole community of supports to get us through the transition to adulthood. Ideas sound so much better coming from a respected peer, a mentor, a cool uncle, cousin or aunt.
There is the school of thought, “Let them choose their own path. Let the cards fall where they may. It’s their journey.” I fully support their path, their choices. However, in our house choosing to do nothing is just not an option on the menu. Doing nothing exacerbates depression and anxiety can be incapacitating. An idle mind has too much time to fixate on negative scenarios. Also, having nothing to do means more time to bug the shit out of Mom. I am already over my limit.
I’m not autistic and yet, I’m pretty good at talking myself out of things that seem daunting. I usually dread the worst outcome. This comes from my own anxiety, which has increased on my journey through motherhood. It doesn’t serve me to think the worst. I’m getting better at not doing this, but I am a work in progress.
I was more optimistic before I had children. Experiencing so many traumas with them (the diagnosis, meltdowns, the constant calls from school, interactions with mental health authorities). All of this changed me. Before kids, I was willing to try anything, to ask for any job, more money. The experience of raising these children, in particular, has changed me beyond the point of recognition.
For our boys, once they hit 18, the choice was either school, work, volunteering, or some combination of these. In Kendal’s case, I sometimes “voluntold” him because I refused to allow him to be bored. Having nothing to do made his behavior intolerable.
Unfortunately, at the age of nineteen, we found ourselves making the decision to gently push Kendal out of the nest and into another living situation. I can barely say the words group home out loud. It just doesn’t sound like a place that a child of mine would ever be. I had put everything I had into raising him and getting him the proper supports and therapies, from the pre-school program for children with disabilities when he was three-years-old, to the school district’s Adult Transition program until he was twenty-two. Not to mention all of the therapies and camps we put him in over the years.
By the time he was 18, I was on the edge of a breakdown mentally. It felt like full access to me made his behavior worse, and his motivation to grow up, stagnate. Living in our home was disruptive and effected everyone, including his younger brother who was in his junior year of high school. Blue could not even do homework in our home without disruption and explosions.
However, Kendal being in a place that he did not love as much as home, motivated him. I think he felt more like an adult. He actually became a leader in that environment. Most of his roommates were not functioning as highly as he was. He was cooking, shopping, preparing his own meals. He had begun to work on weight loss and ended up losing over 100 pounds. He was motivated to acquire the adult living skills so that he could move to live semi-independently with his older brother.
I am proud of the steps these young men have taken towards adulthood, but none of it came without gentle pushes.
The most exciting news is that three weeks ago, we helped Blue buy his first car. He just reached his 21st birthday this month. He has been working and saving for over a year.
His driving journey started at age 16 when he took his first Driver’s Education class. He did well, passing at 95%. However, the whole ordeal caused him quite a bit of anxiety. The mere fact that the class was something additional added into his schedule between school and homework, was enough to throw him off. Nevertheless, he emerged with his driver’s permit.
There wasn’t a lot of driving practice afterward. Anxiety slowed his roll forward. Eventually, in his senior year, we got Vocational Rehab to pay for some behind the wheel lessons. We thought it was better that he drove with a professional instead of us (his parents). He was pretty oppositional and argumentative with us because after all, we “know nothing.” He was less agitated and more relaxed by driving with a professional. Both of the boys behave better when we are not around.
After his first year in college, I gently pushed Blue again to move forward with driving. He decided to take a refresher driving course. After the behind the wheel practice, he finally initiated taking and passing the test his adult license. Still, for various reasons, there was very little driving practice, though continued to save towards a car.
When word got out that Blue got his adult driver’s license, suddenly his older brother was motivated to take more lessons and obtain his license. To date, he’s still working on saving for a car.
Blue has mellowed out so much since he stopped classes at the community college and started working. Working made him feel successful. He is well-liked by his Managers and his peers. He even hangs out with some of his adult coworkers.
His demeanor has made it easier for us to ride with him for driving practice. At least now, he will listen. More so with his father than with me.
Now he’s driving himself to work and to his favorite spot to hang out and write —Starbucks. He has taken himself to the grocery store and Target and of course, out to eat.
We still drive him or ride with him if he has to go across town. There’s no highway driving yet. We are absolutely thrilled that we aren’t paying for Uber or driving him everywhere anymore.
His next goal is to possibly get an internship or apprenticeship so that he can increase his earning potential. Driving gives him more access to the world.
I am extremely proud!
First of all, the term “adult” is very broad. Reaching the age of eighteen or twenty-one makes them legally adults. However, for adults with Autism Spectrum Disorder, delays in development and maturity can be significantly slower than their typical peers.
According to a study by the National Center for Biotechnology Information, U.S. National Library of Medicine in November 2009:
“Because of delays in ongoing social development, some of these individuals may attain educational, independent living and relationship goals, but reach them a decade or more later than typical for the general population.”
In the journey with my sons, I found that too much help could be toxic (and I can be a real helicopter mom. I'm constantly working on it.) Too much help can delay them even further from becoming independent.
Think about it…
Why do things for myself if mom will do it for me?
Why do I need my own money if dad will give me everything that I want and need?
I will never forget the first time Kendal had to take money out of his own account, for his spending "wants." He was so angry with me!
Blue's 1st Car! |
I have also seen examples where not enough help can leave them sitting in the same place for far too long. Once you fall too deeply into depression, it gets even more difficult. Then because they are legally adults, we can’t exactly make them conform to get mental health services.
Let’s face it, often we (parents) are the last people they want telling them what to do. In their heads, they are adults and should be able to make their own choices. I get that. In our experience, the help can not always come directly from me or their father. We need a whole community of supports to get us through the transition to adulthood. Ideas sound so much better coming from a respected peer, a mentor, a cool uncle, cousin or aunt.
There is the school of thought, “Let them choose their own path. Let the cards fall where they may. It’s their journey.” I fully support their path, their choices. However, in our house choosing to do nothing is just not an option on the menu. Doing nothing exacerbates depression and anxiety can be incapacitating. An idle mind has too much time to fixate on negative scenarios. Also, having nothing to do means more time to bug the shit out of Mom. I am already over my limit.
I’m not autistic and yet, I’m pretty good at talking myself out of things that seem daunting. I usually dread the worst outcome. This comes from my own anxiety, which has increased on my journey through motherhood. It doesn’t serve me to think the worst. I’m getting better at not doing this, but I am a work in progress.
I was more optimistic before I had children. Experiencing so many traumas with them (the diagnosis, meltdowns, the constant calls from school, interactions with mental health authorities). All of this changed me. Before kids, I was willing to try anything, to ask for any job, more money. The experience of raising these children, in particular, has changed me beyond the point of recognition.
For our boys, once they hit 18, the choice was either school, work, volunteering, or some combination of these. In Kendal’s case, I sometimes “voluntold” him because I refused to allow him to be bored. Having nothing to do made his behavior intolerable.
Unfortunately, at the age of nineteen, we found ourselves making the decision to gently push Kendal out of the nest and into another living situation. I can barely say the words group home out loud. It just doesn’t sound like a place that a child of mine would ever be. I had put everything I had into raising him and getting him the proper supports and therapies, from the pre-school program for children with disabilities when he was three-years-old, to the school district’s Adult Transition program until he was twenty-two. Not to mention all of the therapies and camps we put him in over the years.
By the time he was 18, I was on the edge of a breakdown mentally. It felt like full access to me made his behavior worse, and his motivation to grow up, stagnate. Living in our home was disruptive and effected everyone, including his younger brother who was in his junior year of high school. Blue could not even do homework in our home without disruption and explosions.
However, Kendal being in a place that he did not love as much as home, motivated him. I think he felt more like an adult. He actually became a leader in that environment. Most of his roommates were not functioning as highly as he was. He was cooking, shopping, preparing his own meals. He had begun to work on weight loss and ended up losing over 100 pounds. He was motivated to acquire the adult living skills so that he could move to live semi-independently with his older brother.
I am proud of the steps these young men have taken towards adulthood, but none of it came without gentle pushes.
The most exciting news is that three weeks ago, we helped Blue buy his first car. He just reached his 21st birthday this month. He has been working and saving for over a year.
His driving journey started at age 16 when he took his first Driver’s Education class. He did well, passing at 95%. However, the whole ordeal caused him quite a bit of anxiety. The mere fact that the class was something additional added into his schedule between school and homework, was enough to throw him off. Nevertheless, he emerged with his driver’s permit.
There wasn’t a lot of driving practice afterward. Anxiety slowed his roll forward. Eventually, in his senior year, we got Vocational Rehab to pay for some behind the wheel lessons. We thought it was better that he drove with a professional instead of us (his parents). He was pretty oppositional and argumentative with us because after all, we “know nothing.” He was less agitated and more relaxed by driving with a professional. Both of the boys behave better when we are not around.
After his first year in college, I gently pushed Blue again to move forward with driving. He decided to take a refresher driving course. After the behind the wheel practice, he finally initiated taking and passing the test his adult license. Still, for various reasons, there was very little driving practice, though continued to save towards a car.
When word got out that Blue got his adult driver’s license, suddenly his older brother was motivated to take more lessons and obtain his license. To date, he’s still working on saving for a car.
Blue has mellowed out so much since he stopped classes at the community college and started working. Working made him feel successful. He is well-liked by his Managers and his peers. He even hangs out with some of his adult coworkers.
His demeanor has made it easier for us to ride with him for driving practice. At least now, he will listen. More so with his father than with me.
Now he’s driving himself to work and to his favorite spot to hang out and write —Starbucks. He has taken himself to the grocery store and Target and of course, out to eat.
We still drive him or ride with him if he has to go across town. There’s no highway driving yet. We are absolutely thrilled that we aren’t paying for Uber or driving him everywhere anymore.
His next goal is to possibly get an internship or apprenticeship so that he can increase his earning potential. Driving gives him more access to the world.
I am extremely proud!
Adelaide Dupont · 284 weeks ago
And for those of us who knew and appreciated these points in high school to a greater or lesser extent - always good to have a refresher and feel them through the current and future generations who we survived to be able to see.
I especially appreciated points 5, 7 and 10.
And young women not settling or settling down yet is a good thing.
"It's never too late to live our dreams" - but it may be too early for some of them!
And 8 of course.
nicole · 243 weeks ago
Risa · 230 weeks ago
LAH · 221 weeks ago
Maira L. Coral · 216 weeks ago
I was looking for information for my Multi-Genre Disability Research Project from my Early Childhood Special Education class on the web, when suddenly I came across your blog. I started reading this out of curiosity and I want to tell you that as you said yourself, you will not be Amanda Gorman, but you managed to make me shed some tears, perhaps because I felt totally identified with your words, especially in the part that you speak of your son. My son also has Asperger's syndrome, he is 19 years old and he is in the second semester of College. Also like yours, he takes classes from home, likewise my eldest daughter is also taking college classes from her room. At the same time, that I work as a preschool teacher from my kitchen through a computer, my husband sleeps in the room during the day because he works at night. Also in the afternoons I myself take virtual school classes. I am a 51-year-old Latin woman who began to learn the English language as adult, so maybe you find some deficiencies in my writing, however, I was very moved by how proud you express yourself about your son. Referent your mother, I liked the humorous tone that you give when your talk about her, so I did not want to miss this opportunity and stopped my assignments for a moment to let you know that your words do make a difference, since they reach the heart of at least those who have opportunity to read you. I want confess you that is the most long I have written to someone I don't know, because your words inspired me, thank you...
Gavin Bollard · 208 weeks ago
Thanks for this post. I've been very distracted of late and so this was how I found out about our friend Kate. Kate's struggles were very real but they were so constant and so wide-ranging that it was difficult for people around her to address them. I think it's going to take a while longer for me to process all this.
I learned so much from Kate because she was always quick to point out the many injustices in the world. In her glory days, she was very much a crusader and she cared for everyone. Over the years, as her situation took its toll, I came to realise that it was the fact that she couldn't be put in a single specific category, that made the system fail her. She needed help that they weren't set up to provide.
She needed more care and she needed to be less alone. I'm so sorry that this has happened.
For a long while we were corresponding almost every day but a couple of months ago, I realised that she had become so stressed that nearly every interaction I had with her was starting to trigger her. I backed away to give her a bit more space. She only had a little time that she could stand to be online and there were too many things that she wanted to do in that time. I thought that by taking a step back, she could reach out to more people who might be geographically closer and able to assist.
Kate was a beautiful soul and she will be sorely missed by all of us.
diyalabs6192603 11p · 191 weeks ago
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Spoil your cat · 121 weeks ago
Many of these living arrangement aren't good, and many of the people who run those places really don't have the residents' best interest at heart. Those places are like old age homes and foster homes, where you sometimes hear horror stories. They're hard to trust. But then there are good ones, of course.
The best thing for an autistic adult is either to go on living at home or working and renting an apartment and living independently, but that isn't always an option.
Duncan · 111 weeks ago