Child about 6 years old standing outside looking at the camera with her fingers and palms different colors with pink, blue, purple, and yellow and a clear sky in the background.

Life Skills Aren’t What You Think: What Research Says About Raising Autistic Kids10 min read

I once knew a child­hood edu­cator who always used to say (often irri­tably), “I am not raising chil­dren. I am raising future adults.”

The skills required for being a suc­cessful child and the skills required for being a suc­cessful adult are com­pletely dif­ferent. Parents value obe­dient, quiet, pas­sive chil­dren who do as they are told and don’t talk back, but the adult world requires you to speak up for your­self, be self-motivated, think for your­self, and make deci­sions inde­pen­dently.

I was great at being a kid.

I was obe­dient, I hated get­ting in trouble, and I hated breaking rules. I enjoyed learning new things, I enjoyed reading, and I had a good memory.

Girl photoshopped sitting on a bunch of pile of books while also reading a book.

I liked pleasing the adults in my life and hated upset­ting them. I learned not to whine or make a fuss because adults did not like that.

Dream child, right?

But it turns out that I’m a garbage adult.

I thrived in a struc­tured atmos­phere growing up, but it turns out I can’t create struc­ture for myself.

I learned not to whine or demand my own way, but I am now inca­pable of standing up for myself and asking for what I want or need.

I was good at doing what I was told, but when employers wanted me to be proac­tive, I had no idea what to do.

To be clear, I’m not blaming my upbringing for this. I was nat­u­rally– per­haps even preter­nat­u­rally– well-behaved because I hated get­ting in trouble so very very much. It’s just who I am and always have been.

Sure, I was still sucking my thumb in grade 3, I spoke exclu­sively about ani­mals, and I was never invited to pop­ular kids’ birthday par­ties, but none of that caused prob­lems for the adults in my life.

As a verbal, bright, and comparatively-social (for an autist) child, you’d think I was marked for great things.

Nope.

I’m use­less at adulting. I cannot func­tion inde­pen­dently. My hus­band was my care­taker, and now that he is ill, my friends are my care­takers.

My mother is still trying to figure out where it all went wrong. She never expected this from me.

I think that most par­ents of autistic chil­dren assume that if their kid is easy to live with, their kid will have an easy life.  If a kid is dif­fi­cult to live with, their kid will have a dif­fi­cult life.

Girl crying crouching in a field with her head on her arms.

They assume that if their child can’t talk, or use the toilet, or go to the gro­cery store without melting down, that their child will never live inde­pen­dently. They seem to think that if they can just get their kid to the gro­cery store and using the toilet and behaving them­selves prop­erly, they’ll be okay and won’t need to go into an insti­tu­tion some day.

But studies actu­ally show that none of these things are reli­able pre­dic­tors for how inde­pen­dent your kid will be some day.

Life Skills Aren’t What You Think

Cyclist holding a bike, standing and looking at a mountain in front of them, facing away from the camera.

Adulthood isn’t really about gro­cery stores or toilet habits.

Hate gro­cery stores? No problem. We can order gro­ceries online, or go at quiet times when there aren’t many people. Hate the cold toilet seat? Many adults wear adult dia­pers and change them­selves as nec­es­sary. They can still be happy and func­tioning adults.

As for behaving one­self… it turns out that learning to be com­pliant and obe­dient is pos­i­tively a hand­icap in adult­hood.

70% of people with ASD are sex­u­ally assaulted in their life­time. Many end up in abu­sive rela­tion­ships or are taken advan­tage of by scheming nurses or care­takers.

It could safely be argued that saying “No!” and refusing to comply are vital self-care skills that should be encour­aged, not dis­cour­aged.

No, all of the supposedly-important skills that ther­a­pists put so much emphasis on are more for the par­ents than the chil­dren.

I potty trained both of my kids as early as pos­sible. I didn’t think it would give them some great start in life. I was just sick of dia­pers. Diapers are ter­rible, and it is won­derful to be free of them.

Frequent public melt­downs make life very dif­fi­cult for par­ents, too. It’s embar­rassing, it eats up an incred­ible amount of time, and it can be frus­trating as hell.

Of course a par­ent’s life is better when their child is com­pliant, cheerful, and toilet trained. I’m a parent– I know what a dif­fer­ence that makes!

…But that doesn’t say a darn thing about how happy or self-sufficient this child will be as an adult.

Let’s look at two hypo­thet­ical autists who are both sort-of-kind-of based on real people I know:

Jamie

Jamie was a quiet, easy-going kid who spent hours sit­ting on the floor going through base­ball cards and making the statistically-perfect dream base­ball team. Keenly intel­li­gent, Jamie breezed through school without ever having to put in the smallest amount of effort.

By uni­ver­sity, though, it was obvious that some­thing was wrong. Jamie was severely depressed and not going to classes or com­pleting school­work.

Despite qual­i­fying for MENSA, Jamie flunked out of sev­eral uni­ver­si­ties and never fin­ished a degree. Jamie is now on dis­ability due to mental ill­ness and has been unable to work for many years.

Alex

Alex was a wild child. Defiant, dyslexic, prone to eloping and climbing trees during school, and incred­ibly stub­born, Alex was con­sid­ered a “dif­fi­cult” child. Alex’s father was a dead-beat dad who left Alex’s mother with four chil­dren on her hands. She was not equipped to handle Alex’s behav­iour, and her brother ended up taking Alex on for sev­eral years.

Alex is now mar­ried with two kids and has a solid union job. While still stub­born and strong-willed, Alex is also a loving parent and a sup­portive spouse who does child­care and chores and goes to work without dif­fi­culty.

From the above exam­ples, which are based on real people with cer­tain details changed to main­tain pri­vacy, you can see that dif­fi­cul­ties– or lack thereof– in child­hood do not nec­es­sarily pre­dict suc­cess in adult­hood.

In fact, long-term studies of autistic people show that it is extremely dif­fi­cult to pre­dict adult suc­cess in autistic chil­dren.

Outside of severe intel­lec­tual dis­ability, there is no reli­able pre­dictor for inde­pen­dence in adult­hood.

Interestingly, despite the rise of inten­sive inter­ven­tion ther­a­pies, the pro­por­tion of autistic people achieving true inde­pen­dence has remained remark­ably steady over time.

These ther­a­pies may help give the kid a push toward devel­oping skills sooner than they would have without the therapy, but there isn’t much evi­dence showing an effect that lasts through adult­hood.

An ABA outcome sheet: Criteria: Cognitive: [scratched out name] when instructions is delivered will imitate the corresponding gross motor movement across 5 targets. Receptive language: [name] will identify 10 common objects from an array of 6. Expressive Language: [name] will request 15 desired items using vocal approximation or augmentative communication such as the Picture Exchange Communication System (PECS). Gross Motor: [name] will throw a ball underhand and overhand at least 3 feet. Fine Motor: [name] will imitate a veariety of block designs (tower, train, bridge, etc.) 90% of the time. Social Emotional: [name] will perform the appropriate respnses, when give the session-related instructions "come sit" and "give it to me.". Behavior: [name]'s parents will implement the prescribed compliance training protocol (i.e. obtain attention, provide clear instruction one time, wait for child response, deliver prompts as necessary to gain compliance, deliver reinforcement) with at least 90% fidelity.

Ultimately, what good does it do to spend time teaching an autistic kid to throw a ball or iden­tify objects on a tray or follow orders unswerv­ingly?

Studies find that autistic people diag­nosed as chil­dren and people diag­nosed in adult­hood are almost iden­tical when it comes to suc­cess in adult­hood. 

 It should be empha­sized that for the sub-group diag­nosed as chil­dren or youth assessed before twenty–five, there were no dif­fer­ences from the adult diag­nosed group assessed in the same age range.

- Autism Spectrum Disorder Grown Up

So the kids who were diag­nosed as chil­dren and who likely received behav­ioral inter­ven­tions and ther­a­pies were no more or less likely to be suc­cessful than the ones who flew under the radar or did not have access to diag­nostic ser­vices.

…Although maybe they could throw a ball better. For some reason researchers didn’t focus on that.

What Should Parents Take From This?

Woman looking unenthused with arms crossed into the camera.

We par­ents just want our kids to be happy and self-sufficient someday, so what are we sup­posed to take from this depressing research?

Actually, the studies I linked sound depressing, but there is a lot of good news in there.

Here are the big take-aways from studies of autistic people in adult­hood:

Your Child Is Delayed… Not Arrested

You don’t have to spend an arm and a leg on therapy to get your child “caught up” to their peers. Longitudinal studies sug­gest that your kid will meet that mile­stone– just at their own pace.

Autistic kids grow and develop and change with time, just like any other kid.

Sure, you can pay to hurry it along, but that’s going to be for your ben­efit, not your kid’s.

The Best Skill You Can Teach Is Self-Advocacy

The same study that I quoted above noted that one of the biggest obsta­cles to edu­ca­tion and employ­ment in adult­hood was acces­si­bility.

A com­bi­na­tion of social dif­fi­cul­ties and sen­sory sen­si­tiv­i­ties made nego­ti­ating edu­ca­tional, voca­tional, and com­mu­nity set­tings dif­fi­cult. Many described feeling over­whelmed and unable to think clearly around other people, and some felt they had been vic­tim­ized by class­mates or co-workers. Some had found a sit­u­a­tion that min­i­mized these chal­lenges– e.g. studying online or a job that was semi-solitary.

Autism Spectrum Disorder Grown Up

I have been told by par­ents of autistic kids that their kid HAS to learn to tol­erate the gro­cery store or HAS to learn that melt­downs in public “aren’t accept­able” because oth­er­wise they can’t be inde­pen­dent someday.

But studies show quite the oppo­site– it’s the ones who learn how to work around their dif­fi­cul­ties, not plow through them, who are more likely to suc­ceed.

Knowing what you need to thrive and how to get accom­mo­da­tion as nec­es­sary may be the single most vital life skill an autistic person can learn.  More than toilet training. Because if your child can go to col­lege, get a degree, and get a job, then they can pay someone to change their dia­pers for them.

Possible rich celebrity with sunglasses and a fancy suit and a nice watch.

Don’t Expect Them To Fail

The one advan­tage that people like me have over those diag­nosed as chil­dren is the fact that we were expected to suc­ceed. Expecting your kid to suc­ceed makes more of a dif­fer­ence than any “inter­ven­tion”.

Community stake­holders, researchers, and providers are increas­ingly focused on indi­vidual, family, and sys­temic fac­tors that con­tribute to pos­i­tive out­comes for adults on the autism spec­trum. Parent expec­ta­tions for their youth’s future are asso­ci­ated with adult out­comes (e.g., employ­ment, school suc­cess, inde­pen­dence). […] The results have impli­ca­tions for how providers dis­cuss expec­ta­tions and sup­port fam­i­lies in preparing for adult­hood.

-Parent Expectations and Preparatory Activities as Adolescents with ASD Transition to Adulthood

Researchers have found that many diag­nosing doc­tors ter­rify par­ents into believing that their child will prob­ably never live inde­pen­dently, and this fear ends up back­firing in the early adult years.

When these chil­dren began to struggle socially and aca­d­e­m­i­cally, often after making the tran­si­tion of high school, their par­ents with­drew them and tried home schooling. This arrange­ment usu­ally decreased the struc­ture in their lives and left the ini­tia­tive for com­ple­tion of the work more with the stu­dent.

Given the often poor exec­u­tive func­tioning of this group, edu­ca­tion often stalled at this point. In addi­tion, their expo­sure to social sit­u­a­tions usu­ally decreased, making the youth more com­fort­able, but more iso­lated. A number of these patients entered their twen­ties living at home, unem­ployed and out of school, in con­tact with the out­side world only through their “online” exis­tence.

Autism Spectrum Disorder Grown Up

It turns out that expecting your child to fail makes them more likely to fail. Not that shocking when you think about it.

Just Be A Parent

 It would appear that the sup­port of ded­i­cated family mem­bers, generic learning and behav­ioral assis­tance in school, and finding a tol­erant work­place and partner var­i­ously con­tributed to a better adjust­ment in adult­hood.

Autism Spectrum Disorder Grown Up

The best thing any parent can do is believe in, love, and sup­port their kid.

Child about 6 years old standing outside looking at the camera with her fingers and palms different colors with pink, blue, purple, and yellow and a clear sky in the background.

Let your kid play. Let them be a kid. Don’t fret so much. Surround your kid with sup­port and com­mu­nity. Studies show that this does more than any therapy:

Language and IQ, which impact inde­pen­dence out­comes for adults with autism, are more or less unaf­fected by inter­ven­tion.

Ruble & Dalrymple (1996) sug­gest that focusing on fea­sible adjust­ments to the envi­ron­ment rather than inter­ven­tion directed at the level of the indi­vidual has sig­nif­i­cant poten­tial to improve out­comes. From this per­spec­tive, the extant research may sug­gest promising envi­ron­mental vari­ables for future study.  […]

In both of these studies, the authors high­lighted a pos­sible target for inter­ven­tion in the com­mu­nity (increasing day­time recre­ational activ­i­ties or com­mu­nity inclu­sion).

- Outcomes in Adults with Autism Spectrum Disorders

So just… enjoy your kid.

Order your gro­ceries and have a cozy Sunday at home instead, or maybe take a trip to a museum or go on a hike– what­ever your kid might enjoy doing.

If you are going to do therapy, focus on quality-of-life stuff– OT to help with dys­praxia, or sen­sory inte­gra­tion therapy, or therapy to help develop skills using an AAC device if your child strug­gles to com­mu­ni­cate ver­bally.

That’s the really impor­tant stuff: Comfort. Communication. Happiness.

I’ll always need someone in my life to make sure my dishes get done and my things get put away.  But… So what?  I’ve got a pretty good life, anyway.

Do your best to believe with all your heart that your child will figure things out and grow up and be okay.

There’s a solid chance that you’ll be right.

 

18 Comments

  1. Very good article! I laughed out loud at this line: “Because if your child can go to col­lege, get a degree, and get a job, then they can pay someone to change their dia­pers for them.”

  2. Great article. During your research, did you find if this is true for other dis­abil­i­ties? I sus­pect it should be.

    1. I’m afraid I only looked at studies on autistic adults and out­comes, but you’re prob­ably right.

    2. I need this insight and article memo­ri­al­ized for­ever!! I know this stuff, I live this stuff but even still the doubt creeps in , so thank you. ♡

  3. I agree with every­thing except the bit about taking a kid out of school. I was made fun of mer­ci­lessly. It did not help me to stay in that envi­ron­ment; it con­tributed to my PTSD which made it harder to func­tion in adult­hood. I am on dis­ability after sev­eral failed attempts at work and two degrees (one is a mas­ter’s degree). No one can say I didn’t try. I tried very hard. I just cannot func­tion for full time hours in over­whelming envi­ron­ments. If any­thing, people would have thought I’d have thrived with all I accom­plished, but it was in fits and starts. I dropped out of col­lege the first time because I burnout from high school. This has hap­pened over and over. I can only handle stress for short dura­tions. Working was con­stant stress. I just can’t. It doesn’t mean I’m a failure, only that the system is rigged for dif­ferent people.

    1. Keep in mind the research didn’t say any­thing against coming out of school and and of itself. It specif­i­cally said that the stu­dents who suc­ceeded in uni­ver­sity were ones who fig­ured out acco­mo­da­tions that worked for them and dis­tance courses were one of those things. What evi­dence found was that par­ents who tried to shelter their kids rather than help them find acco­mo­da­tions were the ones whose kids were less suc­cessful.

      There’s a dif­fer­ence between shel­tering your kid and helping them find a way to get through their edu­ca­tion in a way that works for them. One pro­tects them, the other empowers them.

    2. I thought the article was quite anti home edu­ca­tion too. My expe­ri­ence of home edu­ca­tion my own child has been that they are thriving socially among like-minded peers, so I ques­tion the research cited in this area, and thus all areas men­tioned

      1. I haven’t seen a good, sys­tem­atic dis­cus­sion about home­schooling and dis­abled stu­dents. Are there any good “experts”?

        I’m also inter­ested in the views of dis­abled people who are/were home­schooled and par­ents (or not).

        We’re putting together an online con­fer­ence on inclu­sion — https://snkids.org/call-for-speakers/… and one of the real options is home schooling. If you can sug­gest folks to share on this, please email me at: steve@snkids.org.

        PS — we are inter­ested in other aspects of inclu­sive edu­ca­tion (suc­cessful or not). California has, sadly, the most seg­re­gated edu­ca­tion system for stu­dents with dis­abil­i­ties and we’re trying to get that changed.

  4. Wow lots of fun to read… I don’t know how I did as a parent when they were small — now they are trying to con­tinue uniand the other school (eldest and youngest of 4 are aspi) The eldest diag­nosed at 20 so many mis­takes made and all this was unheard of 🙂 THe Autism Spectrum or ASD etc
    I shall prob­ably have to move towns (gulp to Paris) so my eldest may con­tinue his uni­ver­sity — and I have found out during these researches that I am very likely Asperges too!!! so much to learn grasshopper ^‘^

    1. Hi, cat­payen — I’m in Belgium (so close to Paris, France). If you want to check out our Facebook page please do.

      Great article, my daughter has an ADHD diag­nosis but I relate to such much that you have written.…

  5. Great topic and delivery! I write on Quora and this has been an issue I empha­size often. Autistic kids need to be raised autistic not neu­rotyp­ical. On a neu­ro­log­ical level, our needs are dif­ferent.. What WE need at dif­ferent stages of devel­op­ment are dif­ferent. We need an envi­ron­ment and sup­port to explore and develop our autistic strengths and find solu­tions to our chal­lenges. Just like a neu­rotyp­ical child would not thrive being raised autistic, nor does an autistic child being raised neu­rotyp­ical. This is a CRUTIALLY impor­tant topic that all autistic people need to advo­cate for: That autistic chil­dren and adults have the same oppor­tu­ni­ties to grow, learn, work and live their autistic life as everyone else.

  6. You have raised some very inter­esting points here — espe­cially that of self-advocacy being very impor­tant and com­pli­ance not so much.

    I agree with the per­vious com­ment though that home schooling is a neg­a­tive deci­sion. If you inves­ti­gate what Tony Atwood says about this you will see he believes quite the oppo­site. As he stated in a recent lec­ture I attended “home­schooling saves lives [of ASD chil­dren]”.

    Where I vehe­mently dis­agree is with your state­ment that “70% of ASD people are sex­u­ally assisted in their life­time”. This is neg­li­gent sen­sa­tion­alism and fear-mongering! ONE study — yes ONE — study showed that the ASD par­tic­i­pants ques­tioned had a higher rate of sexual assault then the non-ASD com­par­a­tive group. But to extrap­o­late this data as you have to make such a broad sweeping gen­er­al­iza­tion is totally irre­spon­sible and more impor­tantly — incor­rect!

    1. Argue that if you like but the evi­dence is over­whelming that sexual assault is extremely common among spe­cial needs chil­dren. It’s ugly but we need to face that.

  7. I feel like this article could be really helpful for par­ents who are trying to figure out how to help their chil­dren. I’ll be linking to it in my blog. Thank you for sharing.

  8. Growing up undi­ag­nosed during the “free range” par­enting era of the 1960s and 1970s had plenty of hard­ships and my life has been any­thing but typ­ical. But given the hypo­thet­ical choice between growing then and now, I’ll take what I had, no con­test. If I had the inter­ven­tions, heli­copter and snow­plow par­enting of today growing up I would prob­ably be long dead, and if somehow I sur­vived I would not be coherent enough to write any­thing, truly insane.

    We were not only expected to suc­ceed maybe more impor­tantly we were often left to our own devices to a degree that would get people arrested for parental abuse today. There were times I cer­tainly could have used the help I did not get. But overall it helped me figure out who I am, what works and what does not work for for me.

    Somebody men­tioned your advice could be of use to par­ents of people with non autistic dis­abil­i­ties.. It is useful advice for raising most chil­dren. The failure to raise chil­dren this the way you advised is one of the rea­sons why the rates of anx­iety and depres­sion are sky­rock­eting among American youth.

  9. Could you site your ref­er­ences please. I would like to read some of the research you refer. Thank you.

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