Someone on Facebook was responding to a post against Autism Speaks by complaining that the autistic community didn’t speak for his nonverbal autistic child, and hadn’t helped him at all.

I spent an hour or two composing a reply, and I thought I’d post it here in the hope that it might help others:

You must not be listening to the same autistic people that I am!

I know it’s tough for allistic people because they have to actually make an effort to find and listen to our voices. But what I hear over and over from other autistic people, including nonverbal ones, is a ton of support for nonverbal autistic rights, explicit suggestions for what will help nonverbal autistic people, and explicit suggestions for what their families can and should be doing.

And I see many of the above posted RIGHT HERE in this Facebook group! I’m forced to ask: have you ever gone to an actual autistic-led organization for support, such as ASAN? Because it sounds like you’re angry that INDIVIDUAL autistic people aren’t speaking for your son and providing services to you and your son. But that’s not our job.

Nevertheless, I’m going to spoon-feed you all the information I have that you and your son seem to need.

The most important “services” for your son will be (1) providing him a way to communicate that works for him, and (2) coming to understand what sensory issues he has and helping him avoid them.

These two things are intertwined. Communication will help enormously with sensory issues, because it will give him a way to indicate what those issues are. Sensory issues will help with communication, because he’ll be able to learn to communicate much more easily if he’s not in sensory overwhelm.

For communication, based on what I hear from nonverbal autistic people, this is what’s important:

1. There are MANY options. You will probably have to experiment together to see which one works best for him. Some factors include: he may have visual disorders that you don’t yet know about that make it difficult to read; he may have physical coordination issues that make it hard for him to type or to point. (The latter is more common.) Or of course he may at any given moment be struggling with intense sensory overwhelm that makes it hard/impossible for him to respond to another person trying to teach him a communication method.

2. Some of the main options include:
(a) Sign Languages - these are increasingly popular in the autistic community, and many of us learn them because we find them to be a much clearer and more accessible way for us to communicate than spoken languages. It also gives your child the benefit of being bilingual, which is a nice plus.

There are likely to be sign language classes near you, if you do a simple online search. There are also sign language immersion camps for families, although that might be overwhelming for your son or for both of you. On the other hand, he might enjoy seeing you be on the same footing as him for once – having something to communicate, and not having a way to communicate it.

(b) AAC (Augmentative Alternative Communication)
Here is a good outline of how to get started, with links to further information about whether AAC is a good option for your child: http://www.speechandlanguagekids.com/teach-your-child-to-use-an-aac-device/
and some other great posts about it: http://praacticalaac.org/praactical/aac-posts-from-praactical-week-29-july-2014/

Here, an allistic parent shares her experience and the experiences of autistic people, and talks specifically about Proloquo2Go which is the most popular AAC program: http://praacticalaac.org/praactical/how-i-do-it-autism-and-aac-five-things-i-wish-i-had-known-by-deanne-shoyer/

ASAN has also mentioned that Sprint has put together a pack of “neurodiversity apps” that include a bunch of AAC apps - http://autisticadvocacy.tumblr.com/post/89662457825/asan-statement-on-sprint-neurodiversity-id-pack)

© Typing or Handwriting:
He might have physical barriers to being able to communicate this way. Here are some examples: http://www.meetpenny.com/2012/04/how-we-taught-our-child-with-autism-to-write/ If so, an occupational therapist will be able to help.

There’s a program for teaching autistic kids to read and write, by Dr. Marion Blank, that is apparently what worked for Emma of emmashopebook.com. I believe this is it: http://www.asdreading.com/

(Her dad Richard talks a little about their journey here: http://emmashopebook.com/2012/03/19/shifts/

A different post of his has a fantastic summary of this journey: “Since we found a learning therapy that actually works, my fear-based perspective has altered dramatically. Emma can read, write, add, subtract and speak in complete sentences. She loves to learn. She carries her favorite books around everywhere. With the recent oxytocin boost [from being able to communicate and understand one another], we now walk down the street hand-in-hand – a behavioral shift as radical and unexpected as it would be for me to teleport to Mars.

“Now Ariane and I are blissed-out with happiness much of the time. Our exposure to the writings of adult autistics has been as consciousness expanding as anything we’ve ever experienced. Beautiful voices telling sad, poignant, frustrated and hysterically funny stories of what autistic life is like from the inside.”)

There’s even an app designed by an autistic developer for autistic people to communicate by typing on their phones - http://jgamer-aspie.tumblr.com/post/104065994124/meltdown-emergency-chat

(d) FC (Facilitated Communication)The only place I have found so far that trains people in this is in Australia. But I don’t know where you may be, so here it is: http://www.annemcdonaldcentre.org.au/facilitated-communication-training

Here’s an excellent overview of FC by a nonverbal autistic person: http://withasmoothroundstone.tumblr.com/post/97502573585/someone-asked-me-about-facilitated-communication

(e) RPM (Rapid Prompting Method)
Here’s a presentation by Emma and a little information on her experience typing using RPM versus what comes out of her mouth: http://emmashopebook.com/2014/07/07/saying-one-thing-meaning-another/

And some useful information about how it works and what training in it is like: http://emmashopebook.com/2013/03/15/the-final-day-with-soma-and-a-word-about-methodologies/

And where to learn it: http://www.halo-soma.org/learning.php

As for the sensory side of things, I think your best bet is to read what autistic people write about our experiences, to start trying to recognize what your son may be experiencing. Everyone’s sensory issues are a little different, but there are many commonalities.

Here are some posts, mostly by autistic people, that I think you’ll find useful and informative:

- A fantastic and thorough explanation of what sensory processing issues are like: http://neurowonderful.tumblr.com/post/82341117875/what-is-sensory-processing-disorder-can-a-person

- A good overview of the issue and how it can result in overwhelm and self-injury: http://askanautistic.co.uk/post/111810179044/what-to-do-when-an-autistic-kid-stims-violently

Some things that seem to be pretty common, so are a good place to start:

- Sensory issues are a problem because they stress out our nervous system. This causes overwhelm, meltdowns, and shutdowns.

- Autistic people come with built-in ways to calm our nervous systems. These include stimming, rocking, and sensory pressure. You can buy weighted vests and weighted lap blankets for daytime use. Chewing gum can also provide that sensory pressure we need.

(I like this vest, which is only $25: http://www.amazon.com/SELF-Adjustable-Weighted-8-Pound-Black/dp/B00BUYSNR2/ref=sr_1_1?ie=UTF8&qid=1434389738&sr=8-1&keywords=self+weighted+vest I’m wearing it right now. Not everyone likes the same things though, or to use them for the same amount of time.)

- Earplugs, or noise-canceling headphones or earmuffs, are excellent preventative measures. Amythest suggests other tools in that video as well, like sunglasses and hats.

- We can be sensory-seeking as well as sensory-avoidant. Sometimes we need intense sensory input, like a weighted vest or loud music. Sometimes we need to shut out as much sensory input as possible. Sometimes we need both – to get away from having to interact with others, and their erratic and unpredictable demands, and all the intense smells or lights or sounds around us, and to get into an environment that has soothing and comforting sensory input, even if what we find to be soothing and comforting is blasting heavy metal and smooshing ourselves under a pile of blankets.

- Emotional stuff can drive us into overwhelm just as much as physical sensory stuff can. This is especially common for people who don’t have a way to communicate with others: the intense frustration of not being heard can lead straight to meltdowns. Especially when not being understood means that our needs don’t get met.

And finally, here’s some general basic advice for allistic parents:
* http://emmashopebook.com/2014/11/11/advice-for-parents-with-a-newly-diagnosed-autistic-child-by-rina/

* How to presume competence – how to think about and react to your nonverbal child: http://emmashopebook.com/2014/05/12/your-childs-been-diagnosed-now-what, and http://emmashopebook.com/2013/03/07/presume-competence-what-does-that-mean-exactly/ and http://emmashopebook.com/2014/07/21/presuming-competence-revised/

Nonverbal autistics say over and over – once they have a communication method that works for them – that they understood what was being said to them all that time. Emma herself now writes a lot at the above blog, and this is another good story on the same topic: http://www.autismconsultingservice.com/#!how-to-teach/c1gtu

It is also often the case that autistic people, whether currently verbal or nonverbal, can temporarily lose the ability to understand spoken language when we’re in sensory overwhelm. I don’t know if there are autistic people who can’t process spoken language at all, but I wouldn’t be surprised.

* A list of autistic-led organizations, and writings by nonverbal autistics: http://emmashopebook.com/resources/

* Some specific pieces by nonverbal autistics that will help you start to understand your son’s experiences better:
- Why do I go nonverbal? http://disabledbyculture.tumblr.com/post/34352564563/why-do-i-go-nonverbal
- Tone of voice/‘tone of type’ - http://withasmoothroundstone.tumblr.com/post/99455230955/tone-of-voice
- A different world: http://lysikan.tumblr.com/post/118008321745/a-different-world