How come you became a Speech and Language Therapist if you’re semi-speaking?
A question someone asked me the other day. The strange thing is, I didn’t actually realise I was semi-speaking until after my autism diagnosis. (For those who do not understand what I mean by ‘semi-speaking’ it is the more appropriate wording for someone who is ‘semi-verbal’. Someone who can speak sometimes but not other times.) I was always an articulate child, with a fascination with words and a natural skill in using them to create stories and poetry. I loved words. I loved using them, I loved the sound of them, I loved the way they look. If I was comfortable, most of the time people couldn’t get me to shut up.
That’s where the confusion started.
“You could speak five minutes ago, so you can speak now.”
“Use your voice and stop being so rude.”
“The cat noises need to stop, grow up and speak to me.”
I’ve heard many things from loved ones over the years who just didn’t know any better. Of course, it didn’t make sense for a person to be able to speak one minute but not the next. Often I communicated in ‘meows’ because making sounds was okay but words were inaccessible. I was often called childish for pointing to things to communicate or meowing to indicate ‘yes’ or ‘no’.
How did you end up at the age of twenty-six unable to understand your non-speaking periods?
Well, quite simply because of the comments made above. I was taught through the years that it was immature, rude and unlikeable for me to be non-speaking and so I forced myself to speak.
If you can force speech why is it a problem in the first place?
Firstly, it causes me a hell of a lot of anxiety and has a significant impact on my mental health during and afterwards. Secondly, forcing myself to process and use words makes me exhausted and without the energy to do the other things I need and want to do, like basic self-care. I know it makes everyone else comfortable when I speak, but I’m tired of putting others’ communication needs above my own.
And it doesn’t just stop at speaking. Processing other people’s speech and writing is also difficult, especially if I’m overwhelmed by conflict or the sensory environment. For me, it feels like language can be completely accessible at times. It often feels like it’s difficult to get my thoughts into a coherent sentence to speak it, sometimes I can even find the words I want to put in that sentence. When I’m in pain, I’m completely unable to communicate verbally and gesture is as good as it gets.
How do you communicate if you can’t speak?
I use a Total Communication Approach, which means I use a variety of different methods of communication including: gesture, sign, speech, written words and text-to-speech technology. I am a part-time AAC user, which is an abbreviation for Alternative and Augmentative Communication – any other method of communication aside from speech. I only started using AAC properly after my diagnosis because I never really understood why I couldn’t speak and I would either force myself to or hide away from social interactions (mostly by pretending I was asleep!).
What is like to use AAC?
Beginning to use AAC hasn’t been as easy and accessible as I thought it would be. Being a Speechie I thought I would feel empowered to use it in the community and benefit straight away, but the reality is quite different. All these years, I’ve been encouraging my clients to use it and accept it because speech is not the gold standard of communication. I didn’t understand what it was like to really use AAC, much like many Speechies don’t either.
It’s tough, I’ll start with that. Friends tell me it doesn’t matter if I’m non-speaking, they still want to spend time with me. My boyfriend tells me I should go to see his family even if I can’t access speech. They want me to try to use AAC so that I can still socialise whilst I’m non-speaking. But, it’s tough. Keeping up with conversation in a group is hard when you’re typing and can’t signal you want to interrupt. People don’t understand how to communicate with someone with AAC and find the pauses between a question and an answer uncomfortable. Many people have just spoken for me, hoping that it will just make it comfortable for everyone involved. And the worst part is the frustration other people have when they can’t understand what you’re trying to say. Maybe the speech on the iPad isn’t loud enough to hear in a crowded restaurant. Maybe they haven’t learnt all the signs you asked them to and they don’t understand what your hand signal means. Often, people just give up because it’s ‘too difficult’ for them to continue to guess. It’s frustrating when other people don’t want to learn sign with you because it’s too much effort on their part.
One time, I was in so much pain from a migraine I had to be rushed to A&E. I was in the bedroom for hours, unable to move to get to the toilet only for a loved one to come in and not understand the Makaton sign for pain, walking away and leaving me for another hour of agony. It took another hour after that to make my message known that I needed an ambulance. It took four, horrific hours for me to convey that message. If anyone should be frustrated when I’m non-speaking, it should be me.
What AAC is available for semi-speaking people?
I’m on the hunt! Thus far I have found no funding available from charities or services that provide AAC. That’s because the person can speak most of the time, their understanding and expression of language is not unbalanced so they do not qualify for support. To me, this is nonsense! Everyone deserves a voice, no matter their communication method. We have to understand autism as a dynamic disability, where support needs and skills differ day-to-day, hour-by-hour. Why are we denying people communication systems just because they can speak some of the time? We’re not equipping people with the ability to consent, report abuse, express pain or meet their basic needs by denying them a device. It’s a human rights issue!
But it doesn’t end at giving the person an AAC device. It starts there. We need to support and educate their family members and friends on how to communicate with an AAC user and be accepting of their communication. We must educate the general public about AAC so that we can reduce stigma and make it more accessible to use AAC in the community.
We have a long way to go and I hope I can be part of a change.