Parents of autistic children warn they are being “failed” by speech and language therapy, leaving families forced to pay for private treatment.
A “postcode lottery” of services across the country can result in a lack of appropriate therapists or insufficient equipment to meet children’s needs, according to experts.
Laura Brown, whose son, Ethan, has complex needs including non-verbal autism, said she was “failed by the system” after being told he could not access speech and language therapy “until he talks”.
The parent-turned-campaigner said Ethan, who is six, was “completely dismissed” as a three-year-old, as he could not engage with the speech and language therapist.
“Ethan ran into the room as a high needs autistic individual, not giving eye contact, not responding to the speech therapist, not giving joint attention, which is very classic in autistic individuals,” she said. “We were then just dismissed. Potential wasn’t assumed.”
“We were told ‘without words, we can’t support you anymore’ and ‘until he talks, we can’t help him to talk’,” she added.
Brown, who is now campaigning to improve access and understanding around speech therapy for autistic children, has been backed by her local MP, Gideon Amos of the Liberal Democrats.
She has also gathered more than 300 testimonies from parents struggling with similar issues, and is setting up a parliamentary petition.
Brown said the state-run speech and language therapy service offered “generic speech therapy” that would not meet her child’s complex needs.
Instead, she decided to go down the private route, paying £70 a therapy session and funding an Alternative and Augmentative Communication (AAC) device to support Ethan’s speech development.
Low-tech AAC systems range from communication books and eye-pointing frames to help children convey their needs by pointing or looking towards symbols. High-tech options include tablets with buttons that children can press to express their needs.
Patients can access high-tech AAC devices on the NHS, but current guidelines mean children have to show they can communicate proactively before they can get a device.
Brown said the decision to self-fund Ethan’s ACC after he was not offered one on the NHS has “changed his life in every sense”.
She said: “He’s taught better at school…he’s built relationships. We’ve heard [the words] ‘Mummy’, ‘Daddy’, ‘help’ and ‘I love you’. It’s now his voice, and he speaks with it, but we’ve had to do that all ourselves.
“A speech therapist told us he was too young, and it would stop him talking. If we’d listened to that, I don’t know where we’d be.”
Amos, the MP for Taunton and Wellington, said he “fully supports” the campaign, adding: “Hearing that children are being labelled as a ‘lost cause’ is heartbreaking; children must be given the opportunity to develop through tailored support and the right tools at their disposal, such as AAC devices.”
Jane Harris, CEO of Speech and Language UK, said she often hears from families who are “denied speech therapy purely because of resource constraints” or because the commissioning area does not have enough equipment.
She said: “We should be aiming to help every child to talk in a way that works for them. But children up and down the country are waiting months and sometimes years to get life-changing AAC devices.”
Philippa Cotterill, head of the Welsh branch of the Royal College of Speech and Language Therapists (RCSLT), said professionals support children to develop language skills in the “widest sense”, from learning to form words and sentences to “sign language and non-verbal communication, including gestures”.
But she said that commissioning differs across clinical areas, with some lacking specific therapies, skills or equipment for all children.
“There’s a range of things that are needed to provide speech and language therapy, which are going to vary across services,” she told The i Paper.
Mel Merritt, interim assistant director of policy, research and strategy at the National Autistic Society, said there is a “postcode lottery” in speech and language provision for autistic children, leaving families with “inconsistent support and lengthy delays”.
She said: “By law, all health and social care professionals must receive appropriate training in autism, yet we continue to see major gaps in understanding across health, education and social care. This creates significant barriers to support, including in the case of speech and language therapy, where a high tier of training is needed.”
Under the upcoming reform to special educational needs and disabilities (SEND), the Government has provided £1.8bn over three years to fund the new national “Experts at Hand” offer, wrapping professionals such as speech and language therapists around mainstream education settings to support earlier intervention.
A Government spokesperson said: “No family should be left watching their child struggle while waiting for the help they need.
“This Government is committed to supporting people with neurodevelopmental conditions, including autistic people who should have the right support in place tailored to their needs.
“We are investing £15m over the next three years to increase speech and language therapy service capacity, including promoting apprenticeships in schools and ensuring there is a new advanced speech and language therapist practitioner in every integrated care board.”
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