A Greystones mother has dubbed the HSE’s Progressing Disability Services for Children and Young People (PDSCYP) ‘a complete failure’ after having to watch her 12-year-old autistic son get to the point that he stopped eating and sleeping and was too afraid to go to school before being given support from clinicians.
Aisling Foran last week won a MACE Unsung Hero Award for the work she does as Chairperson of Triple A Wicklow, a voluntary organisation that advocates for and supports those with Autism and related neurodivergent conditions. She is a parent of Aidan (12) and Odhran (21) and works full time, but has also dedicated her time to run the charity since 2017.
She says that having an autistic son has changed her life for the better, including pushing her to get her own autism diagnosis in 2019, but that being a parent of an autistic child can be ‘isolating’.
“Despite the challenges it has changed my life for the better and made me a better person,” she said. “I no longer sweat the small stuff. It has also made me more conscious of the silent struggles people can face.
“It’s very isolating though and every parent I’ve come across has the same experience. Trying to blend in and raise your child and help them grow socially in an environment where they can be misunderstood because of their challenges can be difficult.
“The world is not built for neurodiverse people and this can be a huge barrier. Being invited to birthday parties with mainstream children is non-existent, that’s right across the board not just in our case.”
From speaking about this issue to friends of hers who are parents of neurotypical children, she says that often they express that rather than risk offending or saying something incorrect, they say nothing, and do nothing.
This can lead to children being left out of social occasions as a result. People want to include them, but often don’t know how to broach the subject.
That feeling of isolation she has had as a parent of an autistic child reached it’s peak in November last year when Aidan was being bullied so severely at school for a prolonged period that he stopped eating, sleeping and attending school and began self-harming. He has missed 11 weeks of school this year.
“This issue has been ongoing for some years, and it has been very tough,” she said. “I feel I can’t speak out about it because I’m an autism advocate. Thankfully he’s much better now.
“He wasn’t able to eat or sleep because of it and is in therapy. It will take a lot for all of us to get over, but we are out the other side and thankful that the summer holidays are here. I am nervous about going back in September, but I would hope that everyone has matured over the summer and lessons have been learned.”
Aisling saw no choice but to report the issue to the Ombudsman for Children, and says that it felt that because of her son’s diagnosis of autism, that it seemed more acceptable for him to be in situations which he found threatening. She feels that if he was a neurotypical child experiencing the same difficulties, that the response might have been different.
“Regarding clinical supports like psychology or speech and language therapy, there is less support now than there was when Aidan was diagnosed,” she claims. “Ongoing staffing issues from the inception of the move towards Progressing Disability Services for Children and Young People is a complete failure there’s no doubt about it. Pay, conditions and caseload definitely need to be examined.
“The burden is being put on the parents to try to be a therapist as well as being a bread winner, a parent and advocate.
“We thankfully have services now due to the crisis that ensued due to the bullying, but I had to go extreme lengths to all of the agencies to get that support. The whole experience was demoralising and degrading and has had an impact on my own wellbeing.
“I am lucky in that I am quite a strong person and I have experience of navigating the system due to my work in the area.
“However, every parent of a child with additional needs whom I speak to is having the same experience in trying to access services with many experiencing their own health issues as a result.”
Aisling had no support network when Aidan was diagnosed as she had only just moved to Greystones. Joining Triple A Wicklow in 2014 made all the difference.
“It was a great support for me to find out how to navigate the system and learn more about how to support my son,” she said. “Early intervention from the state is non-existent. I took over as chair in 2017 to lobby for better supports, because the new parents coming in are still facing the same issues I did, even now 12 years later.”
Most neurodivergent people find it hard to blend in because their responses to people and the world around them can often come across to neurotypical people as rude or abrupt. The constraints of social rules are not as important to autistic people and they can often find it hard to understand social norms.
“There needs to be more awareness and understanding taught in schools, “ said Aisling. “We have the awareness, but not the understanding.”
It’s this lack of understanding about why autistic people behave the way they do that contributed to the situation Aidan experienced. Aisling explained the steps she is taking to help him return to that social setting in September.
“As a parent I need to get my son to a place where he can support himself if I am no longer around,” she said. “I am teaching him about the levels of friendship. Levels 1, 2, 3 i.e. who is a casual friend, and who he can trust. I’m teaching him how to stand up for himself in an appropriate way. With neurotypical children, they pick up these skills up day by day, as they are developing, but for those on the spectrum these life skills need to be taught explicitly.
“It can be a long process to teach these skills, and because anxiety is a key feature of autism, when a traumatic event occurs it can be more difficult for the autistic person to overcome that trauma. She added: “I’m trying to build his confidence back up to where it was, and give him the skills to respond appropriately.”
While Aisling cares for her own son, she is also helping many others with autism through Triple A Wicklow, which has some big projects set to be launched later this year.
“Last year we collaborated with Greystones Tidy Towns and developed a Greystones Sensory Garden,” she explained. “Wicklow County Council donated the land in Burnaby park. It launched in October. Now we have gotten funding from Mental Health Ireland and are going to develop a Community Sensory Room which we believe will be the first such facility in Ireland.
“It is in collaboration with Little Bray Family Resource Centre and they have given us the room and will look after the cleaning and admin, and it will be open to anyone who wants to use it for a very small fee. It’s being kitted out at the moment and should be ready end of August.”
Triple A Wicklow has also been granted funding from Wicklow County Council to develop an initiative that supports businesses, organisations and the general public to provide more inclusive environments, removing the stigma and judgement that often surrounds neurodivergent people who have hidden disabilities.
Similar to the JAM (Just A Minute) Card seen on public transport in Ireland, the charity will adopt the globally-recognised Hidden Disability Sunflower symbol. Businesses can pop a sticker in their window to signify that they signed up and gone through the training to make their space better equipped to welcome people with hidden disabilities.
People with disabilities will be able to get a lanyard or badge that then tells people, wherever they go, that they have a hidden disability.
It also means that any tourists who would like to travel to Wicklow from overseas will be able to access support from this globally recognised brand.
“We hope that it will launch in November,” said Aisling. “It’s a gamechanger for the county. We would love to see other counties follow suit with this initiative.”
To find out more about Wicklow Triple A Alliance you can visit their website here: www.triplea.ie or follow them on facebook here fb/tripleawicklow