Giving a voice to individuals with apraxia of speech
Childhood apraxia of speech
Chelsea Hulse and Lucas (Friend of speech apraxia, parent champion)
Chelsea Hulse and Lucas (Friend of speech apraxia, parent champion)
Chelsea Hulse and Lucas (Friend of speech apraxia, parent champion)
I first took Lucas to the doctor when he was 2 because he wasn’t talking to us at all. After a lot of frustration & standardised speech therapy, Lucas was finally diagnosed at 6 with CAS, still with extremely limited expressive language. Fast forward just over 2 years & with specialist, intensive support Lucas is making amazing progress, which just shows how important specialist support is for children like Lucas to reach their potential. We regularly attend CAS awareness days as a family to meet likeminded families & professionals. I completed a sponsored skydive in 2024 to raise funds towards CAS assessments, and also helped to create an official CAS pathway in my local area, after noticing a gap in service provision following Lucas’s diagnosis. I’d love to share the highs & lows of us navigating our ongoing journey, to support people on a similar journey
Mikey's incredible journey
Chelsea Hulse and Lucas (Friend of speech apraxia, parent champion)
Chelsea Hulse and Lucas (Friend of speech apraxia, parent champion)
Mikey Akers is the founder of Mikey’s Wish Foundation, a registered charity that raises awareness of and supports people with speech, language and communication needs with an interest in Childhood Apraxia of Speech. Mikey was diagnosed with CAS when he was just 2 years old and has spent the last 10 years actively raising awareness of the diagnosis. He has travelled to America to speak at conferences, is an ‘Expert by Experience’ at Birmingham City University, travels England giving talks at conferences and schools. He has appeared in the documentary, Chris Kamara: Lost for Words. Mikey is working with a number of MPs to secure more funding for speech and language services after his petition was debated in Parliament earlier this year Facebook
Changing the Narrative on Verbal Dyspraxia
by Dyspraxia Magazine January 24, 2024
Dyspraxia or DCD (developmental coordination disorder) has had more than its fair share of causing issues in my daily life. What has impacted me the most regarding my dyspraxia, is the verbal element, sometimes specifically called verbal dyspraxia. Whether I am in a social or work environment the physical aspect of dyspraxia is not usually that visible to most and I can go a long time without ever feeling the need to mention that dyspraxia causes me issues with coordination. However, verbally my dyspraxia is very apparent.
The impact my speech has had on my mental health has grown significantly as I’ve gotten older. Surprisingly, kids didn’t react much to my speech impediment growing up, but adults have. For some reason, adults have decided that the way you speak is a direct link to your IQ capabilities and is an indicator as to whether or not they will respect you. Honestly, it’s the worst.
This prejudice needs to stop.
Read the full article here
Changing the Narrative on Verbal Dyspraxia – Dyspraxia Magazine
Learn More
Our organisation Speech Apraxia UK has loads of information to help you navigate Speech Apraxia, whether that is to help with a diagnosis, therapy options, or simply a bit of advice.. Check out our resource page.
Growing up with childhood apraxia of Speech
Jaron
Jordan
Jaron
Jaron Talks about growing up with apraxia and living with it today.
Isela
Jordan
Jaron
Living With Apraxia of Speech | BeautywithIsela
Isela describes what apraxia of speech is. She talks about how her childhood apraxia of speech continues to affect her as an adult.
Jordan
Jordan
Growing Up with Verbal Apraxia (CAS) - Q&A
Jordan Christian LeVan has a suite of videos and his own website, 'Flighting for my voice,' discussing the issues around apraxia of speech.
Lottie Berry - Founder Blog Tap Type Talk
Lottie Berry is the Founder of Tap Type Talk, an autism, apraxia, and AAC advocacy platform.
As Mum to an autistic non-speaking son who has Suspected Childhood Apraxia of Speech, Lottie is passionate about supporting parents and carers who are following a similar journey. She believes that every non-speaking child deserves a voice of their own through AAC, specialist speech support, and literacy instruction
Mac
Joanne
My Journey with Apraxia of Speech
Speech has always been a source of both frustration and fascination for Mac.. Diagnosed with childhood apraxia of speech, Mac spent almost a decade in therapy learning how to communicate. His channel shares his experiences growing up with a speech disorder, along with strategies, insights, and advice for anyone navigating similar challenges. He also dives into the science behind speech and apraxia in a way that’s clear and approachable
I
Joanne
Joanne
Joanne Bendel “If you are growing up with apraxia, or you grew up with apraxia, I want you to know that you are not alone. You see, I have it too, which means that we’ve probably faced similar challenges in life. Because we have a hard time putting sounds together, it makes communicating difficult. As you’re aware, not being well-understood means that we might have a few more obstacles in our path than other people do. But that’s what makes us unique.
Carly
Heather and Jordan
Heather and Jordan
Carly Fleischmann is an amazing person who doesn’t let nonverbal autism and apraxia of speech stop her. She uses technology to share her thoughts and ideas. Carly co-wrote the book “Carly’s Voice: Breaking Through Autism” and has her own YouTube show. Her story inspires neurodivergent kids all around the world.
Heather and Jordan
Heather and Jordan
Heather and Jordan
Heather and Jordan discuss growing up with childhood apraxia of speech and managing as adults
Jade Scown
Heather and Jordan
Jade Scown
This news story from the ABC (Austrailia) Specialist Reporting Team’s Mary Lloyd and national disability affairs reporter features Jade Scown who grew up with CAS
Daniel
Daniel
Jade Scown
Daniel has no voice due to speech apraxia. He has made one of the most powerful films I have seen.
Pam Slater and her daughter- raising awareness of genetics
FOXP2, literally one in a million!
FOXP2, literally one in a million!
FOXP2, literally one in a million!
My daughter was diagnosed with FOXP2 related speech and language disorder in 2017, age 9 years. That’s when the jigsaw pieces came together and we could finally begin to make sense of the variety of symptoms and challenges that this rare condition brings.
For us, the FOXP2 diagnosis explained three seemingly unrelated areas
- The low muscle tone (hypotonia), and inability to sit or fully crawl as a baby
- The poor eye contact and divergent squint
- The limited babbling as a baby, and speech that was unclear, even to immediate family, with no obvious reason for it
This ‘de novo’ or new genetic change in our family – a seemingly random genetic occurrence – has had life changing consequences for us all, and particularly for my daughter. Early intensive physiotherapy intervention resulted in fantastic progress, although her speech remains the significant challenge. The only treatment for Childhood Apraxia of Speech (CAS), confirmed at nearly 6 years of age, is high intensity Speech and Language Therapy following principles of motor planning, with repetition, repetition, repetition. CAS is a lifelong neurological speech condition.
Communication
FOXP2, literally one in a million!
FOXP2, literally one in a million!
Makaton was used to try and help with communication, along with a communication book. Now that she’s at a specialist high school, she has access to an AAC (Augmentative Alternative Communication) device, but she would still prefer to use her voice to communicate. She’s now had over 13 years in speech therapy.
Speech is ‘automatic’ for so many of us, and yet it is SO complicated. Childhood Apraxia of Speech (CAS) is a ‘disorder of speech motor programming or planning that affects the production, sequencing, timing, and stress of sounds, syllables, and words. All individuals with CAS – whether caused by an alteration of FOXP2 or of an unknown cause—have difficulties in automatically and accurately sequencing speech sounds into syllables, syllables into words, and words into sentences with the correct prosody.(1)
The mental health impact from all the years of not being understood is evident. In our case, CAS also affects literacy, with a whole word approach used to aid learning to read. Spelling is still a struggle.
Yet, despite the challenges to communicate, I have never met a more determined young person who will endeavor to find a way to get their message across.The hours spent practicing speech to strengthen the neural pathway and automate speech, the willingness to have a go. You’d never guess at the physical challenges overcome if you saw her today.
Receiving a genetic diagnosis has given us the opportunity to connect with a wonderful team from The Murdoch Children’s Research Institute and University of Melbourne, which led to some significant speech progress for my daughter when combined Rapid Syllable Transition Treatment (ReST) and The Nuffield Dyspraxia programmes (NDP3) were trialed.
Research, resources and support
Research
Research has identified that CAS is a red flag for genetic cause, with 1:3 being due to a genetic change.Whether due to genetic, trauma, or unknown causes, there is relatively little known about CAS, with only 1:1000 of children in speech therapy having CAS.
FOXP2 was the first causative gene of CAS to be discovered in 2001. Incredibly, research over the last three years has identified over 30 genes that are responsible for CAS. (2)
Finding support groups online has put me in contact with amazing advocates; Mikey’s Wish and other families, who are working tirelessly to raise awareness of CAS in the UK. Support from Unique, who have free disorder guides on their website and a closed Facebook group for families.
Resources and support
#14daysofDVD, co-produced with The RCSLT and The Dyspraxia Foundation led up to Apraxia Awareness Day on 14 May in 2022. It is an exciting time in the UK for CAS.
The RCSLT position paper on Childhood Apraxia of Speech (2024) provides great guidance on CAS
On Rare Disease Day and beyond, I would love other families and clinicians to ‘dare to think rare’ and be aware that a speech condition can be part of a bigger picture and could even be part of a rare condition.
References and bio
(1) NLM Citation: Morgan A, Fisher SE, Scheffer I, et al. FOXP2-Related Speech and Language Disorders. 2016 Jun 23 [Updated 2017 Feb 2]. In: Adam MP, Ardinger HH, Pagon RA, et al., editors. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2021. Bookshelf URL: https://www.ncbi.nlm.nih.gov/books
(2) Molecular Psychiatry; https://doi.org/10.1038/s41380-024-02409-8
Genetic architecture of childhood speech disorder: a review
Angela T. Morgan 1,2,3 , David J. Amor1,4, Miya D. St John1,2, Ingrid. E. Scheffer 1,5 and Michael S. Hildebrand 1,5
The Author(s) 2024
Bio
- Parent of a child with a rare condition, FoxP2.
- Co-produced #14daysofdvd with The RCSLT and The Dyspraxia Foundation 2022
- Contributed to The RCSLT updated position statement on CAS, as a parent voice
- Patient Ambassador for Medics for Rare Diseases 2024
Pam recorded a podcast with Speech Apraxia UK, which will be available shortly when our series 'Talking Speech Apraxia' comes out.
A mother's journey
Journey of discovery and finally a diagnosis
As a parent of someone with CAS, I soon found out how little is known about this condition. Our 'first' story started with two late preemies, two wonderful and strong little girls. Not interacting with them has always been impossible. They were chatty babies, and they still are, and I was an exhausted twin mum. This has improved over time! Checkups were common for preemies, and they came back normal till their 13th month. At that point, I brought some concerns, not too many honestly, referring to the lack of babbling of one of my girls. The other one had started at 9 months to call me 'Mama'. The doctor found the baby a bit delayed, but they could not understand why she was able to do certain things and not others. Being preemies and identical twins, they suggested that we start with early intervention for both. Our ‘second’ story began there. The time passed, and their expressive language was not developing as it should have been. We looked for different experts. Behaviour was their greatest concern, because they seemed to be too hyper. Referring to their speech, all these different doctors stated the same: ‘These kids understand everything’ - ‘They are extremely communicative’ - ‘They are ready and will talk soon’. Soon… Waiting… I stopped waiting for milestones. When they turned three and a half, the girl who was first observed as a bit delayed started telling stories about daily happenings…using her body and her gestures. And something clicked on: ‘Why can she tell such complex stories while her vocab hasn’t exploded yet?’…and ‘why do they look at my mouth constantly?’ ‘Why are they not able to repeat a syllable on demand, even though they have plenty of phonemes?’… My head was full of 'Whys', and a word came up: APRAXIA.
I bashfully started asking the therapists and the doctors around us for explanations. At first, they reacted incredulously. Then, they opened up: ’Mum, you may be right’. And I understood something that could be frightening for a parent: Apraxia of speech is rare; it means that a lot of therapists have heard of it, they may have learnt a little bit about it, but not enough to recognise and treat this condition properly. And our ‘third’ story started from that point: a story of fighting. Fighting for the right diagnosis. Fighting for the right treatments. Fighting against misconceptions. Fighting to let people know that the lack of intelligible speech does not represent the lack of thought. Fighting to keep my family strong and happy, and honestly, my kids have helped us the most here! I have been lucky enough to know a few languages and I have read, studied, listened to anything around CAS in English, Italian, French and German. And I chose to study even more. I am continuing my studies and exploring the world of special needs at school.
I have just completed my Master’s in Learning Difficulties and Special Needs. I am going to discuss my thesis, which, not surprisingly, is about CAS. I wanted to explore some aspects that many people, at school but not only there, completely ignore:CAS is not just about speech, and speech is not only about words. According to some research, apraxia of speech is supposed to be a sensory-motor disorder: sensory integration and motor perception, in addition to planning, may be affected. As a result, for instance, at school, a child with CAS and sensory-motor issues could be ‘trapped,’ with few or no opportunities to show what they know and how much they have been learning. It is usually assumed that these kids may use multiple-choice tests and simply cross out or point to the right answer. They are generally expected to compensate with their body for what their mouth cannot do. However, for some kids, relying on their body could be impossible. Pointing, something that a child with CAS has done since the very early phases of their communicative journey, may be extremely tough if combined with sensory and cognitive requests.
It is very unfair, but there are many kids who are facing these challenges, and here, I want to include also the kids who share other comorbidities, might be misunderstood and underrated if these issues are not properly considered by educators and evaluators. Other methods should be put in place to assess their knowledge and their progress in learning. Input and output do not correspond for CAS kids. They may need time to find their own way, and teachers also need awareness and education to figure out how to support them. I entitled my work Investing in the ‘NOT YET.’ Understanding Verbal Apraxia and its World, because the Not can help, and these little individuals can make progress and improve. We know CAS is a lifelong condition; progress may be extremely slow, but resilience and the right support can lessen CAS symptoms over time, make CAS individuals’ lives easier, and eventually give them the ‘words’ they deserve. We need patience and to be together in the long haul. The complete understanding of this perspective is what I hope for all
Kendra and Elliot with their non profit 'Elliot's Voice'
About Us
Our son Elliott is four years old, full of energy, laughter, and curiosity. He loves playing outside, exploring new places, and being around people — but he has childhood apraxia of speech (CAS), which makes speaking words out loud very difficult for him. Elliott understands everything around him, yet he can’t always get the words out. As a parent, it’s heartbreaking to see your child with so much to say but not having the means to share it.
Low tech AAC
Low-tech options are vital because technology can fail, get left behind, or fall and break. With boards placed in public spaces, communication is always available—no batteries, no Wi-Fi, no worries. s.
Elliot's Voice
That’s why we created Elliott’s Voice. We wanted Elliott — and children like him — to have tools to be understood wherever they go. Our nonprofit designs and donates low-tech communication boards to public spaces such as parks, libraries, zoos, and even with fire and police departments. These boards use symbols and pictures to give children and adults a way to express their needs, feelings, and choices without relying only on speech.
What it means to us
For Elliott, this means he can tell us if he wants to swing at the park, ask for a snack, or share how he feels in the moment. For us as his parents, it means watching him be included, respected, and heard. What started as something deeply personal for our family has grown into a mission to make the world more inclusive for everyone with communication challenges.
Communication for everyone
At Elliott’s Voice, we believe communication is different for everyone. By making low-tech AAC tools visible and available in everyday and emergency settings, we’re not just raising awareness of apraxia — we’re creating communities where every child, every person, and every voice matters.
Future plans
Kendra has recorded a podcast with 'Speech Apraxia UK,' which will be available when our podcast series comes out shortly. She is also a parent ambassador for Speech Apraxia UK helping spread this valuable message From Candyland game boards to waterproof swim boards and baseball-themed tools, her creations open doors for children to connect in real-life settings. For Kendra, this is about more than boards; it’s about ensuring no child with CAS feels isolated, and that families know they are not alone. .
Childhood Apraxia of Speech-developmental verbal dyspraxia
Ronda Rousey UFC fighter
For the first six years of Ronda Rouey’s life, she struggled to form intelligible sentences. While at the time she was not diagnosed with Childhood Apraxia of Speech, as the condition was extremely rare and not well understood, Rousey did take speech therapy lessons as a child.
She told ABC News about it in 2015, saying, “At first I was tested for deafness. They thought maybe my pronunciation was off because I was hearing things differently. But it was really I had all these words perfectly arranged in my head, it’s just when they tried to come out of my mouth they sounded different. It was kind of like there was a divide between my brain and my mouth."
Ronda Rousey and her family believe that it may have been the fact that Rouey was born with her umbilical cord wrapped around her neck that caused the disorder. It’s ironic that someone who became known for choking out opponents was almost choked out in birth. It’s almost as if it was fate. Ronda was born a fighter, so she became one professionally as well.(Thesportstar.com, 2025) Ronda Rousey wants Becky Lynch at WrestleMania: Raw, Feb. 25, 2019
Ronda Rousey- Champian Fighter and individual with childhood apraxia of speech has led an amazing career!
https://www.biography.com/athletes/a71188184/ronda-rousey-career-facts
Sean Allsop-BBC sounds
Although not specifically CAS Luton-born Sean Allsop grew up with a phonological sound disorder ,Sean only started to speak at the age of eight. Now he's presenting a podcast about how to find your voice...
As a child, Sean struggled to talk. He was only able to communicate effectively thanks to years of speech therapy.
Those years of struggle "cemented the emotions of not being understood and struggling to express myself," he says.
Now Sean wants to find out about new tools and tech helping people who struggle to communicate.
He met Yvonne, who is taking part in 'voice banking' - a way of using artificial intelligence to preserve her voice before it's lost. Yvonne has early-stage Motor Neurone Disease (MND), a nerve condition which affects her speech. The technology means she can use her own voice to tell Sean how much it means to her.
"Having clear speech is part of an individual's personality," she says. "It's about living our lives and saying we love each other."
The software doesn't come cheap, though. And while there are many innovative ways to help people communicate, sometimes the simplest methods are the best.
In San Cesareo, Italy, they've put up special sign boards across the whole town. The boards use a system of symbols which people can point to, in order to communicate their thoughts, needs and feelings.
The innovation all started with one schoolboy, Alessandro, who has autism. His grandmother Rita campaigned to have the boards put up in public spaces, and now all the children of the town are using them.
All this reminds Sean of how much it mattered to him when speech therapy games were introduced to everyone in his class at school - just to help him feel included as a little boy.
And as for the podcast - making it has taken time, with Sean needing multiple attempts to record his lines. And all the new innovations he's heard about will also take time to introduce.
"Until then, our patience is the biggest tool we can offer," Sean says.
Hear Sean presenting his podcast, in his own words and voice: https://bbc.in/3H9UJVq
Photo from BBC World Sounds