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Speech and language challenges are a significant concern in the UK, highlighting the crucial need for support in this area. According to written evidence by the Parliament, around 7.6% of children – roughly two in every standard class of 30 – face lasting difficulties with speaking and comprehension.
In the face of challenges, speech and language therapies show that most people receiving support experience improved outcomes and overall well-being.
‘’ The reason I went into speech and language therapy is because my eldest son, who is autistic. I’ve already documented my children’s language development, and I thought, well, it makes sense to do speech and language therapy because my brain is very active, and I need lots of stimulation.
I remember thinking, I wish I’d known about this career when making my choices at school.’’
Autistic stimming involves repetitive sounds or movements frequently used by people on the autism spectrum to support them in regulating emotions, managing sensory input, or coping with stress. Jodee shares that part of her approach is normalising stimming that helps neurodivergent people self-regulate and process emotions.
‘’It’s short for “stimulation” or “self-stimulation.” In the medical model of autism, they discuss stereotypical behaviours such as hand flapping, rocking, and similar actions. These are the stereotyped ideas about what stimming is, and many people believe that when autistic people are doing these actions, like rocking, it’s a sign of anxiety. But actually, everybody stims. For example, you might fiddle with your hair, which is a form of stimming. You might tap your fingers, chew on things, or have a pen you’re always playing with—that’s all stimming. I need quite a lot of movement, so fidgets work well because I can just spin things. The frequency of the vibration feels very healing to me.’’
We all do things that help regulate our bodies. For some, it’s noise or tapping; others prefer to stroke things to feel calm. Some need movement.
‘’There’s been a lot of stigma… People say stimming looks weird, but actually, it’s the person’s way to heal their body or to calm themselves again. So, it’s really important that we normalise stimming, so encourage people to stim because it helps them to feel calmer. The people we work with tend to be in quite a lot of distress. That’s why they’re in our company.
When I go to see somebody, I take my bag of toys with me, and I fidget with them. What I’m looking for is to see whether using toys like these helps them feel calmer because when they’re calm, they can engage in therapy and communicate better. So I’m describing what’s going on, and then that helps that person to feel, like, actually, it’s OK for me to do this.’’
Reflecting on her own experience as a parent, emotions can often be misunderstood. When her son was young, she thought he was feeling angry because of the way he expressed himself, but it turned out he was feeling something else entirely.
‘’We’re often told to label the emotions we see, but this can be a problem with autistic people because their facial expressions might not match what we think the emotion is.
My boy, Gideon, struggled to fall asleep at night, often staying up until 1 or 2 a.m., speaking loudly, which kept everyone awake. When he was younger, I’d go to his room and say, “I’m going to switch off your brain so you can sleep,” just as a metaphor. But he’d get visibly upset and tell me to go away.
As a speech therapist, I was taught that with small children who are not very good at labelling their own emotions, we should look at their emotions and label what we see. So, I would say, “You look angry. To me, this emotion is anger. What’s making you angry?” But he’d respond, “Nothing,” and still couldn’t sleep.
I then used an app with images of different emotions and asked him to pick the one that matched his feelings. Surprisingly, he chose “worried.” He explained he feared that if his brain were “switched off,” he wouldn’t wake up in the morning. This taught me that often, a lot of the people that we work with, especially if they’re autistic, their facial expressions might not match what we think the emotion is.’’
So, are we asking the right questions?
Communication is deeply personal, and working closely with families to allow them to understand their loved one’s unique language, Jodee creates “communication dictionaries” that decode phrases that might seem unfamiliar but hold personal meaning.
‘’I am autistic and have lived experience of trauma and mental health, which means that I am often able to connect with people in non-traditional ways and am not affected by the stigma of mental health.
To understand how autistic people think, the best way to find that out is to ask them. We tend to go and learn about autism and then say, well, you must be feeling this because I’ve learnt all about autism, but actually, we have to find ways to enable people to express themselves. Most times, autistic people feel pain differently as well, and it’s directly connected to speech and language. While we may feel physical reactions, like increased heart rate or sweating, we often don’t recognise these as signs of distress. The part of our body that signals changes doesn’t communicate with our brain, so we may not realise something is wrong. This is also true for emotional pain. Our bodies feel dysregulated, but our brains don’t register the issue. Consequently, we often don’t ask for help because we’re unaware of our distress.’’
Therapy might include supporting people to understand and fully participate in the world around them, express their views meaningfully using their preferred communication style, and promote self-awareness, autonomy and self-advocacy. This might involve working directly with a person or coaching / training their care, support team, and family to meet their communication, sensory or swallowing needs.
‘’I worked with a young man who used phrases from Thomas the Tank Engine to express distress. When he said, “Oh no, there’s a cow on the track,” it was his way of signalling that he needed help, often preceding a meltdown. As a speech and language therapist, I focus on understanding how people communicate their distress, which can sometimes stem from pain. Collaborating with family members is crucial, as they can provide insight into these communication cues.
For this young man, we created a communication dictionary to clarify the meanings behind his phrases. Though it might seem complex to others, it made sense to me as someone who shares similar experiences. Ultimately, our efforts to decode his communication helped everyone understand his needs better.’’
It’s really important to be curious about the way people see the world. This is why speech and language therapists’ role is to work out their perspectives because that gives them clues to their focus by finding out how they interpret.
‘’Facial expressions give me clues as to whether they understand their actions. For example, if they’ve upset someone. If they don’t understand, you can’t accuse them and tell them they did this on purpose. They don’t understand that you’re upset. Recognising this allows us to approach our work with greater compassion.’’
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