Joanne McCracken pictured with her two boys Tiernan (10) and Caolan (6).
AN Armagh mother has revealed parents of autistic children have been left feeling “completely abandoned” throughout the coronavirus lockdown.
Hitting out at the lack of support locally for families of children with the condition, Joanne McCracken revealed it is a similar view being expressed by many parents who feel “let down” by the services available.
Since the coronavirus lockdown in March, Joanne, like so many other parents, has been left with the difficult task of providing daily support to her two boys, Tiernan (10) and Caolan (6), who have autism.
Joanne, who is chairperson of the More Than Words Autism Group, has been involved with many families during the past three months of lockdown and has been offering much needed support.
“Once our Youth Club closed, I knew more than ever that parents needed to stay connected to help support each other,” Joanne told the Ulster Gazette.
“Feedback from ASD (Autism Spectrum Disorder) families is that they have been let down by Autism Services in Armagh,” Joanne said, before adding: “There has been no support for families during COVID-19.”
“Parents feel completely abandoned and left to struggle through the crisis themselves.
“Any parent whose child has not been discharged from the service experienced difficulty getting through to speak to a member of staff at the Autism Centre in Armagh.
“Any parents who were lucky to get through were told that they have a huge backlog, and everything is on hold and they would have to wait until services resume again.
“This is completely unacceptable. Autism won’t wait for a crisis to end!
“Schools with hundreds of students were able to stay in touch and even continue teaching through technology.
“Why couldn’t Autism Services within our Trust do likewise? Surely some of this can be done from home?
“Other areas within the Trust, who support individuals with autism or learning disabilities and who provide work experience, have continued to maintain contact and support them - for example, the Gathering Rooms Café in Vicars Hill Armagh and The Print Room.
“Parents have told me that they feel extremely let down by The Oaks - Armagh’s Autism Centre, formerly known as Acorns.
“There was no support made available to help the families’ transition into this crisis, no support available to help them adjust schedules and set up new routines, or even to offer advice.
“Any family who is still registered with the Oaks tend to be newly diagnosed and needed this support more than ever. These families were abandoned and left to struggle through.
“Families who are going through the diagnostic process feel like they have been forgotten about. What is the plan for these families?
“In my experience the length of time that it takes to receive a diagnosis is ridiculous as you are bounced back and forth. If it took that long before, surely it will be worse now?”
Joanne, a mother of five - who established a support group in 2016 for parents across Armagh - explained how a sudden change to a routine can have a detrimental effect on anyone with autism.
“Individuals with autism were suddenly stripped from their routine back in March,” recalled Joanne, who added: “Anyone raising a child with autism, or an individual with autism, will know all too well how crucial routine is.
“My boys have rigid patterns of thinking and are not very flexible. They are attached to familiar routines and will follow these very precisely.
“When there is a sudden change in routine, like we experienced during COVID-19 lockdown, it caused an adverse effect in my boys’ behaviour.
“Because they process information differently, sudden changes can lead to meltdowns as they are unable to communicate or explain how they are feeling or understand what is going on. During a meltdown, my boys can feel anxiety, fear and confusion. Changes in routine can make them feel less safe and secure.
“It is important for my boys that they have structure, consistency and predictability in their environment; even a small disruption to their scheduled routine causes them distress and confusion and, because they struggle to express how they feel, they will become extremely frustrated and upset which in turn causes disruption to family life,” Joanne added.