Georgia: Autistic Adults Left Behind

While children have access to free therapy, treatment centres are not equipped to support adults.

Georgia: Autistic Adults Left Behind

While children have access to free therapy, treatment centres are not equipped to support adults.

Nikoloz who turned 18 a few months ago has Autism Spectrum Disorder (ASD), which impacts his communication skills and is often expressed in limited and repetitive patterns of behaviour.
Nikoloz who turned 18 a few months ago has Autism Spectrum Disorder (ASD), which impacts his communication skills and is often expressed in limited and repetitive patterns of behaviour. © IWPR
Monday, 28 March, 2022

Nikoloz turned 18 a few months ago, but unlike most youngsters, becoming an adult means that doors will now close rather than open for him.

The youth has Autism Spectrum Disorder (ASD), which impacts his communication skills and is often expressed in limited and repetitive patterns of behaviour.

Nikoloz was receiving therapy at a private centre in Tbilisi where the state municipality finances 20 hours of treatment per month. However, this programme ends as soon as the child becomes an adult.

“After years of therapy, it was just now that he became motivated in studying and learning new things, but now he has to quit everything and stay at home,” Nikoloz’s mother Eka Maisuradze, 55, told IWPR.

This had led to a serious regression in Nikoloz’s development, she continued. What he had gained and learned through years of complex therapy had been all but lost.

“This is the moment when he needs to learn occupational and social skills in order to be able to live on his own. He’s my only child. What will happen to him when I’m not by his side anymore? How is he going to survive?” Maisuradze said.

The problem is repeated across Georgia. Parents have been lobbying the authorities to remove the age limitation for those with ASD so that they can at least receive already existing therapy, although so far with no success.

But experts warn that the issue is more complex. Not only is the state municipality programme limited to those under 18, but treatment centres are also not well-equipped to treat adults - and specialists also lack experience in working with them.

Treatments for children, such as Applied Behavioural Analysis (ABA) and sensorial, speech and language therapy are far less useful for adults with ASD, who need to learn skills for living on their own and joining the workforce.

“We have no experience working with adults,” psychologist Gvantsa Chvamania explained.  “First of all, we need training and exchange programmes to upgrade professionals. Those who have been working with children under the age of 15 only, are not able to work with 25-year-olds right away.

“Secondly, an assistant system is needed, to teach professions to beneficiaries, while we are continuing to work with them. But the needs of grown-ups vary individually and a group of experts needs to define who needs what and how to proceed,” Chvamania concluded.

Maia Gabunia, the founder of the Mental Health Centre Gamma organisation, agreed.

“Centres are now only well equipped for children and it’s impossible to treat a 20-year old person here,” she continued. “If we have to teach them how to fry eggs, first of all, we need a kitchen, right? And then all the appliances for it. Unfortunately we do not have one.”

“We have made enormous steps forward in the last 15 years in terms of developing rehabilitation centres providing combined therapies for children” Medea Zirakashvili, psychiatrist and child neurologist, told IWPR.

“But meanwhile, beneficiaries are growing up and they have different needs. Now they need to gain social, educational and occupational skills to be able to live on their own. These services are completely absent in Georgia, but crucially important for adults,” she said.

Experts say that they need a better funding system and more flexibility to be able to cater for the needs of adults with ASD. Rehabilitation centres need serious investment to upgrade their infrastructure, with further training for therapists.

“It was only through donations that we were able to come to this point, when we can provide good-quality rehabilitation services for children with ASD. Now we have a vital challenge ahead – to fulfil the needs of grown-ups. We’ve already made a strategic plan on how this system should work, but unfortunately, we haven’t yet found a donor,” Gabunia said.

Chvamania added, “The state financing system also has to change. With grown-ups, I might need an intensive one-week course instead of 20 hours of therapy per month. Now, within this programme we are not able to work like this. So, the system also has to adjust to the needs of adults.”

Zirakashvili said that an integrated approach would be essential to filling the gaps in the system.

“Simply raising the age limit won’t give us any profound progress if we do not upgrade both the infrastructure and professionals,” she continued. “The concept of our strategic plan is based on an individual having a personal assistant, an employment service, psycho-rehabilitation service, supportive service for parents, winter and summer camps, etc. It’s crucially important to find a donor as soon as possible.”

According to parents, in total 21 teenagers left such centres in 2020-2021, and this number is predicted to grow as more children gain access to services.

Medea Shalamberidze’s son’s Luka has also just turned 18, and she too fears for his future.

“There is absolutely nothing for our children when they become 18,” the 41-year-old said. “Luka will finish school this year and afterwards, he will have absolutely no reason to leave the house."

This publication was prepared under the "Amplify, Verify, Engage (AVE) Project" implemented with the financial support of the Ministry of Foreign Affairs, Norway.

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