realsocialskills:

Anonymous said to realsocialskills:

I thought your post about kids with autism was great… but tbh I feel like a lot of autism resources ignore autistic people who are less self aware? For example, my sister, who has autism and is unaware of it + cannot speak… where are the resources that apply to her?

How can I help and support her? I feel like people with autism like her are frequently ignored in these kinds of posts.

realsocialskills said:

Several things:

Remember how much you don’t know:

• You can’t really say definitively that your sister isn’t aware of autism
• There is no reliable way to assess receptive language in someone without reliable expressive communication
• Ie: You know that your sister can’t talk; you don’t know what she understands
• Some tests can show that someone *does* understand language, but they can never show definitively that they *don’t*
• Your sister may understand language; she may not. There’s no reliable way to be sure
• It’s important to keep both possibilities in mind
• Dave Hingsburger wrote a couple of good posts about interacting with nonspeaking people who may or may not understand language here and here

Keeping in mind the possibility that she understands language (or that she might be able to learn how to use language):

• Talk to her like she understands
• Tell her about things you think she might want to know (including autism)
• Tell her that you can what she thinks, and that you know she might understand you
• When you make choices related to her, explain them to her
• Tell her what’s going on and what’s going to happen, whether or not she demonstrates understanding
• Have books around about things she might want to know about
• Turn the TV or radio to things you think she might be interested in
• If she’s a child, put her in educational settings in which she’s hearing lessons on grade-level material, whether or not she’s able to demonstrate comprehension
• Keep trying for communication support

Regarding communication support:

• There are a *lot* of different things to try
• A month-long trial is not long enough to determine whether a communication strategy will work for someone
• Some people can use a system right away; some people need months of being shown how it works and experimentation before they can use it
• You don’t have to use simpler systems before you can do more complex things
• One of the things you should try is a high-tech AAC system based on core vocabulary.
• Speak For Yourself has some advantages over most other systems (including that they have good resources for people supporting family members without much professional support)
• This is a good post on the importance of trying things, with some suggestions of things to try. (It’s written by a parent of a young child, but it’s also relevant for people supporting older children or adults).
• Human-supported systems like a PODD book work better for some people
• Signed languages like ASL work well for some people
• The Rapid Prompting Method works for some people nothing else works for. (It’s particularly effective for people with severe apraxia or severe attention problems.)
• Facilitated Communication/Supported Typing also works well for some people who other methods don’t work for. (It has major drawbacks and risks, including the fact that a lot of people will assume that her communication isn’t real. But it does work well for some people.)
• Multi-sensory systems like Makaton also work for some people (but systems that allow for more open forms of communication are better)
• tl;dr There are a *lot* of approaches to supporting communication, and it’s important to keep trying to find one that will work for her

Keep in mind the possibility that she does not understand language, or that she needs help understanding it:

• She might not understand words
• She might need pictures or symbols to help her understand words
• She might need simplified language (but don’t make *everything* simplified, because that might not be what she needs. It’s a guess)
• Whether or not she understands language, she does think, and her thoughts matter
• She likes and dislikes things, and that matters too
• (Self-awareness and language aren’t the same thing)

Make room for stuff she cares about:

• If you think she likes, cares about, or is interested in something, find ways of making that thing available to her
• Even if it’s things like watching the same clips on YouTube over and over, or spinning things.
• If those things are important to her, then they’re important
• Create opportunities for her to try new things. (Not forced. But like, offer her different kinds of food and books and stuff to watch on TV and places to go.)
• Let it be an end in itself
• Don’t make everything she likes into therapy
• And *especially* don’t make everything she likes into a reinforcer to get her to do what you want
• She has the right to like things, be interested in things, and have time that is her own

Help her to find a peer group:

• If she doesn’t know any other autistic people, that’s a problem
• If she doesn’t know any other nonspeaking people, that’s a problem
• If the only time she spends with other disabled people is in tightly regimented special education or therapeutic settings, that’s also a problem
• It’s important for disabled people to have the opportunity to meet and interact with other disabled people
• This is particularly important for disabled people whose communication is thoroughly atypical.
• Eg: there may be other autistic people who readily understand her body language
• Not all disabled people will be friends, and it’s important not to force it
• It’s also important to create opportunities
• (And to make sure she’s seen pictures and videos of other people who look like her.)

Find ways of listening to her:

• Whether or not she uses language, she’s communicating some things in some ways
• Find ways of listening to her
• Pay attention to what she does, and how she’s reacting to things, and what you think she might mean
• (Do keep in mind that you’re guessing — it’s easy to misunderstand nonverbal communication when someone has no words or unambiguous symbolic gestures to correct you with).
• Tell her, through words and actions, that you care about understanding what she’s telling you
• Eg: Say explicitly things like “I think you are trying to tell me something. I’m not sure what you mean, but I’m trying to understand.”
• Then when you think you know what she means, don’t ignore it; act on it
• Whether or not she understands your words, it’s likely that saying them will help her to understand that you care. (It will also remind you to care).
• The more you work on listening to her, the more often you will understand her communication

Creative arts therapists might be helpful:

• Some creative arts therapists (particularly music therapists) do good work with nonspeaking people
• They can often find expressive and receptive communication that others don’t find
• They can also help to figure out what someone likes
• (Make sure the person you go to isn’t also a behaviorist. Behavior therapists are not good at this and they tend to cause other problems).

Share what you know about her communication:

• If others think she doesn’t communicate, tell them what you know or suspect about her communication
• Sometimes they will use what you tell them to communicate with her
• Even if they don’t believe you, the fact that you think she communicates will often make them treat her better

Don’t make decisions for her that she can make for herself:

• eg: If she understands what clothing is and can pick a shirt, don’t decide for her which shirt to wear
• If there are different kinds of food, don’t pick for her; ask her what she wants
• If she’s in a social setting with other people; don’t prompt her into interacting with particular people. Being nonspeaking doesn’t make you the boss of her social life.
• Just generally, don’t script everything. Respect her space and see what she initiates and chooses.
• And if she needs help choosing, don’t take over; offer support
• Eg: If she’s overwhelmed by the number of shirts she has, try picking up two and asking which one.

tl;dr If someone doesn’t speak, it’s important not to assume they’re unable to understand language — and also important not to assume that they do. In either case, it’s important to listen to them, speak to them respectfully, work on finding ways to support their communication, make room for their interests, and respect their decisions.