I often post things about autism acceptance on my Facebook wall. Recently, a friend sent me this message, and with her permission I thought I’d share it and my answer:
Hey Tasia, I really appreciate your posts about autism. They’ve changed my way of looking at autism. I think I’m more accepting and am able to think of autistic people more as “different” rather than “disabled.”
But I have trouble understanding something and I thought maybe you’d help me. I’m sure this is a common question. What about autistic people who are so severely affected that they can’t really communicate with other people? I think that if I had a child like that, I’d do anything I could to help bridge the gap, and part of that would definitely be some kind of communication therapy. Is that “changing” the child or “helping” the child?
It is a common question. 🙂 I’ll take your example of a child who doesn’t seem to be able to communicate with others. Conventional thinking says the child should learn to speak so he can communicate. Parents and therapists tell children “use your words” and dismiss the child’s attempts at other forms of communication. They believe that “behavior is not communication.”
In this mindset, the use of iPads and other devices to facilitate nonverbal communication can actually be controversial–some see it as a crutch that will prevent the child from ever learning to speak; some see it as a concession, an acknowledgment that the child has “failed” to learn speech so they must resort to this.
The acceptance mindset says that while you encourage the child to communicate, you also 1) facilitate and celebrate communication in whatever form it occurs, and 2) actively try to learn the child’s ways of communication.
Through autistic people, I have learned that there are ways to communicate without words. They do it among themselves easily–it’s almost eerie to watch Nick and Karla sometimes as they seem to send their thoughts to each other without saying a word, and without the kind of body language that I understand (but I am learning!).
Acceptance is about helping the child without treating him as though he is inadequate as he is, without making him think his way is wrong, or that other people are somehow better than him and he should try to be like them. You provide him with tools and teach him how to use them within the boundaries of his abilities.
Also, I think it’s fine to think of autism as a disability. The fact is, there are some things that Nick can’t do, and he will need to advocate for accommodations, now at school, later in the workplace, always among the people in his life. Ultimately, I would love to see autism known simply as a difference in neurology, just one of many ways of being human. But right now, societal assumptions of “normal” ability put him outside that range.
The different with autism compared to other disabilities is that autism is commonly seen as something that can be defeated. Something that, if they just work hard enough, they can overcome. And many people spend years and years trying to overcome something that is part of who they are, leaving them feeling hopeless and inadequate.
A lot of people reject the acceptance movement because they think we are saying they should do nothing to help their kids live better lives (and note that it’s almost always parents saying this, not autistic people themselves). When your nine-year-old child is nonverbal, doesn’t feed himself, has not toilet trained, perhaps self-injures… of course you want to help your child to learn as many life skills and safe coping skills as possible. But how you do it matters. If you can start with acceptance of your child for the unique human being he is, and become OK with the possibility that he will always have the same needs he does now, then you can move on respectfully and patiently to helping him learn new skills on his own timetable, for his own sake and not anyone else’s.
Something I keep in mind when considering therapies and the like: do I want this for my child, or do I want this for others?
Life skills benefit the child and can be taught without any implication that the child is “lesser” for not having them. Social skills are another story and that’s where acceptance comes more into play.
Example: autistic kids are often not allowed to stim. Stimming (flapping, rocking, pacing, fidgeting) is an important tool for self-regulation. Stopping his stims does not benefit the child in any way; in fact, it hurts him and is counter-productive. (Self-injurious stims are another matter, but those can be redirected instead of suppressed.) But conventional thinking says that stimming is bad so they try to make it go away. Why is it bad? Because it makes other people uncomfortable.
This is what most social therapies are about: teaching the autistic child to behave in such a way that makes everyone else feel comfortable. Teaching him to do and say and even think the “right” things. (Yes, social training does actually tell them what they should be thinking.) This is the sort of thing that the acceptance movement protests.
Autism has its own culture and assuming positive intent is central to it. While my autistic friends are direct and blunt, and they really can’t be any other way, they are generally not hurtful. It’s my responsibility to not read emotion into their words that isn’t there.
Acceptance means that I take them as they are, rather than insisting that they change the way they talk to me. It means I don’t tell them to stop flapping because it’s distracting; instead I find my own ways to stay focused (and it works great that in autistic culture, I can look away without being called rude!). It means I understand that they are working hard every day to process the world and I don’t ask them to work even harder just to make me feel comfortable. Actually, as long as I am accepting, I feel perfectly comfortable.
Of course we all want to maximize our kids’ potential. When we work toward that goal with acceptance, we see autism as simply a part of who they are, not something to be trained out of them.
Thank You for saying this so eloquently. I say it many times in a day, but somehow it just never sounds as wonderful and clear-cut as your post. This will be my Autism share of the day on my personal page, because it is a message everyone needs to hear. 🙂
Thanks for the share!
Brilliant. I’m currently trying to decide whether my kid’s sleep schedule is flipped 180 because she’s too busy at night or she has a sleep disorder. I’ll try a couple of changes to see if i can change it a bit, but although it’s a pain if going to bed at 8am is normal for her, ok fine.
Sleep is really important for both of you. I don’t think it’s unreasonable to want your child to sleep at night and work toward that. 🙂 Autism does often come with sleep disorders, but that is a health issue and not autism itself.
I was struck profoundly by the eloquence of your post. So I shared it on FB. FWIW, I’ve posted my lead-in to the sharing here below.
“I love this! As a Christian, this model of parenting fits live a glove with my obligation to love my child — not as I want them to be, or when I am comfortable, but as a sacred, beloved being. When behaviours upset, distract, or irritate me I am learning (scratched out “know”) that it’s my issue. And honouring him, and the God who made him means trying my best not to paint him with my challenges. That doesn’t mean I want to help him learn where he may need to meet NTs (neuro-typicals) part-way. But if I am to love God, and love him as best I can….. :)”
Thank you for what you are doing, and for sharing your efforts.
Oops… Last para in quote should have read — “That doesn’t mean I don’t want….”. Inadvertent deletion. 🙂
Thank you for the share.
LOVE THIS! Sharing on FB. 🙂
You said: “In this mindset, the use of iPads and other devices to facilitate nonverbal communication can actually be controversial–some see it as a crutch that will prevent the child from ever learning to speak; some see it as a concession, an acknowledgment that the child has “failed” to learn speech so they must resort to this.”
To those people who consider the use of iPads, and other communication devices, a crutch, would they deny someone with a mobility issue the use of a wheelchair, or any other mobility device? No? Then why is the use of iPads, and other communication devices, for someone who cannot communicate verbally, any different? It isn’t.
Thankfully my son (currently 14) with moderate autism is able to communicate verbally, though he has a minor speech impairment, and is unable to wrap his tongue around some words. When I can’t understand a word he says I ask him to write it down, and afterwards help him break the word down into its basic sound components, then help him speed it up until he can pronounce it.
It’s this accommodation that we, as parents, make to teach our children, in the most effective way for them to learn, that is the best way to help them succeed. Cookie cutter therapy where children are all painted with the same brush never made much sense to me, and the therapies that I consider inherently cruel I reject because they’re harmful to the fundamental wellbeing of the child.
As for Karla, she is great! I love how she selflessly shares herself with us via her FB page, and she teaches ME more everyday about autism. I’m so glad to have stumbled upon her page. 🙂
I completely agree with you about communication devices as crutches. The problem is that many parents think that conceding to the use of a “wheelchair” means conceding that their kids “will never walk” and removes the motivation for them to even try. If you believe that speaking is the ideal way to communicate and that anything else is lesser, and you think if he just tries hard enough he can do it, of course you want to push your child to speak. The problem is they don’t see the severe costs to the child in self-esteem, token use, and ability to learn other skills. It is possible to do a lot of harm with nothing but good intentions.
Unfortunately, many of them would see a wheelchair the same way. Especially if their child can walk with difficulty, as opposed to being completely unable to walk at all. (Contrary to stereotypes, many wheelchair users can walk, just not easily enough to walk everywhere they need to go.)
Pingback: Lessen the effects, not the person | that cynking feeling
Thanks for sharing.
Pingback: Changing the child vs. helping the child | The Autism Centre
Thanks for the share.
I really love your sharing of this article (for lack of a better word). My daughter has gone from non-verbal, pooping in her panties to articulate and working on being independent. I wish that I could have gotten her assistative devices when she was younger, she is 14, they would have helped lower the level of frustration that came with not being able to communicate to those around her. The school eventually created a picture board for her and with that she not only was able to communicate non-verbally but it helped her verbally. She had a picture to show while she was learning to speak. She wants to go to college and stay in a dorm. As a parent this scares me but I trust my daughter. I trust that she is independent enough to take care of herself. I have 4 years to prepare her for this and I know beyond a shadow of a doubt she can do it. I just don’t want her to go to far away, like no more than 30 minutes away. Can’t help that, I am a mom and I am her mom. It has not been an easy road for us and there have been many times when we both got frustrated but we worked through it. We’re family, its what we do. I think that anything that we can do as parents to help our children live as full a life as possible, no matter what assistance is needed, is awesome. Denying someone something because we can’t handle it is wrong. We are not the ones that live with the issues 24/7, they are. I have a child with Autism, a grandson with ADD/ODD and another grandson that ADHD. Each one of them is unique and special and that is how we treat them. They are not given any special priviledges, nothing more or less that we have done for the children and grandchildren that do not face this issues. We have learned to treat the child as an individual, discipline them as an individual and love and care for them as an individual. That is how they are learning to live, independent and individually.
Good luck to your daughter! It’s awesome that she has such great support. My son is a freshman in high school and he has college goals too. 🙂
I once worried about the iPad/alternative methods as a crutch when my child was very young, just a few years ago 🙂 Her speech was regressing and I didn’t know how to help. But as I focused in on her and her methods of communicating (and boy she has so many!), I realized that she was actually communicating more and making more attempts to communicate the less she was using words. It was as if the more she wanted to communicate, the more complex her world, the less she was able to use speech. So my job as parent and teacher was to find ways to allow her to communicate. That focus has led to so much positive growth. We all need to pause and evaluate what “help” means for our children. Thanks so much for this post!
That’s great insight. Thank you!
I wish that when children are first diagnosed with Autism, they would talk with the parents about acceptance more. It would make the journey so much easier. It took my husband and I years to finally come around to the kind of thinking you have expressed here. And now that we have all of us are so much more relaxed and happy. And the more relaxed and happy we have become, the more strides our son has made. Good words! Thank you for sharing this with all of us.
I wish they would, too. In our area, thanks to autistic advocates, more and more professionals are starting to understand this.
As is seemingly the rule among those of Normalistic instincts, the package is the sole matter of importance. Content is immaterial, due to the magical nature of the unconscious. Were this NOT so, the emphasis would be something closer to “how you communicate is far less important than 1) the fact that you DO communicate; and 2) I can understand what you mean in a useful manner.
My own thoughts would be ‘you’re writing! Excellent! I prefer written interaction myself, even if I can speak. Why? It seems that ‘speech’, with its emphasis of form rather than function – as evidenced by body language and tone of voice conveying eighty or more percent of the meaning – tends to be misinterpreted if I’m the one speaking. In contrast, writing takes my ‘oddness’ out of the loop, and focuses the mind of the reader soley upon the information. Finally, I’ve known for many years – over a quarter century before being officially diagnosed as ‘autistic’ some years ago – that “I write better than I talk.” (This coming from someone who spoke ‘early’ and spoke especially ‘well’ – as in complete sentences prior to a year of age. (unless my mother lied to me…)
Pingback: Changing or helping the child? | lovenlearning
Pingback: Ask an Autistic #16 - Is Autism a Disability? - What is it