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

Parents of autistic children are often led to believe that toileting, doing well in grocery stores, and compliance are what predict success for autistic adults, but here's what research has to say.

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.

 

17 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.

  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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