Tipperary autism charity warns families are struggling to access services
A Tipperary charity supporting hundreds of children with autism is operating on a shoestring budget, with its founder warning that demand for its services is continuing to grow.
The founder of Autism Awareness Roscrea (AAR), Marguerite Ryan, says that the charity needs more support in order to expand their offering to children and parents.
Treasurer of the charity, and mother to a son with autism, Aine McGee told the Irish Independent that just because they’re a charity, running costs are no lower than the average person’s.
“People assume that we mustn’t be paying much for rent or insurance, but we have to pay for the rent of the place here, which is €600, the electricity would be in and around the same, and your insurance on top of that is another €1,000.
“So with all that and other bits that we provide, you’re talking about €15,000 a year just to keep the doors open,” Ms McGee explained.
Autism Awareness Roscrea has a hub on the edge of the town, which used to be a former supermarket. They also expanded into the adjoining house, and have a fully-fitted kitchen, an arts and crafts room and sensory rooms, as well as an office for counselling or other therapies.
Ms Ryan says that the supplies for the arts and crafts room come mainly from donations, and funds to kit out the sensory rooms with play equipment was fundraised by local man John Mullins who did a solo Hyrox and raised over €20,000.
The charity is supported by Tipperary County Council, Tipperary Education and Training Board, and North Tipperary Development Company, among others, but often falls through the cracks in applying for Government funding schemes.
The charity offers support to different groups for children of different ages with autism including breakfast clubs and evening clubs for children, as well as groups for parents who want to find peer support.
One of the specialist playrooms in the AAR hub.
Not only does AAR support parents and children who come to them, they also do outreach at festivals around the area, as well as supporting other organisations in the locality who can come in and use their facilities.
Over the summer alone, AAR have supported more than 250 children through school visits with their Special Needs Assistants (SNAs), July Provision and a range of other programmes.
“That’s a huge number for a little hub like ourselves,” Ms Ryan said.
When Marguerite Ryan’s son was diagnosed with autism, she did not know where to turn for help.
“When my son was diagnosed, I met Aine in the supermarket,” she said.
Aine McGee, who is now treasurer of Autism Awareness Roscrea, told Marguerite to call her and said she would help her work through the paperwork.
The hub can give guidance to parents, as well as offering advice and a safe place where their children can be themselves.
“I have family members going through the motions of getting diagnosed now, and they have said that only for me, because I’ve been through it, they wouldn’t know where to go. There isn’t a one-stop shop where to go for someone to go for advise,” Ms Ryan said.
One of the sensory rooms in the AAR hub.
“Some departments are doing part of it and then they’re referring to another department, it needs to be better in terms of structure,” she explained.
The charity has seen a marked increase in demand for its services, with further increases expected.
“I don’t mind saying it, but there’s an increase of diagnoses coming, because we’re seeing it, and a lot of it will be high-needs, and dual diagnoses,” Ms Ryan said.
Parent representative Annah Jeggo said that many children they support have autism and Attention Deficit Hyperactivity Disorder (ADHD).
“It’s no longer just autism or ADHD, it’s now autism and ADHD,” she said.
With changes in classifying autism, Ms Ryan added that it can be more difficult to access the right support, saying that autism should still be classified by level, rather than as one overall diagnosis.
“They’re saying we don’t have levels of autism anymore, it’s just autism, but we have levels, and I think they need to return,” she said.
Ms Jeggo agrees, saying that despite her son, as well as Ms Ryan’s and Ms McGee’s having autism, they are completely different in their needs.
“If you put our three sons together, they’re completely different. It’s like apples, oranges and kiwis, they’re totally different,” she said.
Ms McGee added: “If you’ve met one person with autism, you’ve met one person with autism, because all of our kids will have different needs.”
Another big issue for parents of children with autism is securing a school place, with Ms Jeggo saying that even though her son is only in 4th class, she’s already looking for a secondary school place for him.
“He’s in an ASD class, and he’s fine where he is, he’s doing really well, but secondary school. He’s not going to cope in a mainstream secondary school in an ASD class. He needs a special school,” she explained.
“He was going to go from Moneygall to Portlaoise or even Tullamore for a special school. There’s a school here, there’s a new school in Nenagh and there’s Cashel, which is over an hour away. There’s Tullamore, Portlaoise, and Limerick.
“So I’m looking at my child being on a bus for over an hour each way,” Ms Jeggo added.
Ms McGee said that while many parents have the choice to send their children to schools further away, for parents of children with autism, they have no choice.
“They can make that choice. We can’t,” she said.
Ms McGee added that in a special school, when a child turns 18, they have to leave school that year, regardless of if they’ve done six years of second level education or not.
While special schools offer support to children with various, complex medical needs, the group say that more autism-specific schools should be set up.
“There’s no joined-up thinking,” Ms Ryan said. “There’s not enough consultation with parents, and that’s the way I am in my role, it’s about meeting people and developing those relationships,” she added.
Ms Ryan added that the assessment of need system should be changed, saying that waiting lists are forcing parents to pay thousands of euro just to get a diagnosis.
“Assessments are costing a minimum of €1,200. When my son was being diagnosed seven years ago, I had no alternative, I had to pay for the assessment.”
“He needed that report of his diagnosis to access the educational supports he required, so I made that choice,” she added.
Back at the AAR hub, Ms Ryan, who is the volunteer manager, said that so much more could be done with the space if they had full-time staff to run it and extend the service.
“At the hub, we celebrate the wins,” she said.
Ms Jeggo added: “we’re happy when the kids progress, we celebrate the wins and we’re so happy for all the kids and how good they’re getting on.”
“Those little wins are huge steps for us,” Ms Ryan said.
“We have an open-door policy, if you want to come and stay for the club, you can stay for the club, some parents will say to me, ‘Marguerite, I’ll stay but can I go and get a cup of tea in the kitchen?’ and of course they can,” she said.
“It’s vitally important that parents get the support they need.
“The resilience that our parents have shown and the work they’re doing is beyond measure. Despite the challenge, they keep on trying and will continue to keep trying,” she added.