Emily*, a mother of a 2-and-a-half-year-old boy, was advised to get early intervention for her son, but she needed an official diagnosis to get treatment for him. Her son was diagnosed with autism by a private multidisciplinary team in October 2016 after six weeks and after spending €750.
“Just because I could find the money to do that, my child got a much better start than another child whose parents didn’t have the money,” she said.
According to The National Council for Special Education, an estimated 1 in 65 people are on the autism spectrum.
Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder with symptoms including difficulties with communication and understanding social cues, impaired eye contact, delayed speech, repetitive behaviours, and sensitivity to light and noise.
The cause of autism is still unknown, and there is no cure. The DSM-V, a diagnostic manual used by psychologists released in 2013 as an update to the DSM-IV, combined the previous diagnoses of Autism, Asperger’s Syndrome, Pervasive Developmental Disorder Not Otherwise Specified into an umbrella term, called ASD.
A family seeking an ASD diagnosis through the HSE can wait over a year to get an evaluation. Within that time, the child with ASD may not have access to vital services.
“As of yet, he has not even been contacted by the public system to say he will come for a diagnosis, so I don’t know how long it would have taken to have a public diagnosis,” Emily said about her son. “Look at my little boy. He’s still out there in the public system, only for I had the money and the savvy to go private,” she said.
Another parent, Sarah* , has a 7-year-old daughter who was diagnosed with autism in February 2014. Sarah’s daughter was on the waiting list for about a year. “There [are] no services right now. You do get a diagnosis, and you’re sent on your way basically,” she said. Sarah would like more assessments, services offered to help her daughter improve her social skills, and more resources for schools.
Recently, Sarah was forced to pull her daughter out of school because of the lack of resources and because the teachers didn’t know how to deal with children with autism. “There’s a lack of everything in this country for children on the spectrum,” she said.
The HSE do not keep track of how many on the waiting lists for these services have ASD or are going for evaluation for ASD, so the number of people waiting for services includes people with all disabilities.
The average number of people nationwide on the waiting list for assessment for occupational therapy in 2016 is 26,225, with 34% waiting 0-12 weeks and 18% waiting over 52 weeks. The nationwide average number waiting for psychology is 6,968, with 28% waiting 0-12 weeks and 26% waiting over 52 weeks. The average number waiting for speech and language therapy initial assessment is 15,329, with 64% waiting for 0-4 months and 2% waiting over 24 months.
Long wait times for ASD diagnosis and treatments can result in some serious consequences for children.
“For young children, in particular, early intervention is associated with best outcomes, so longer waiting times has an adverse impact on their development. While waiting, behavioural issues can worsen, stress and anxiety can also increase, and for school age children, they may not be able to fully access the school curriculum setting them back academically,” UL psychology lecturer Dr Jennifer McMahon said.
“Since 2014, the roll out of the Progressing Disability Services for Children and Young People (0-18s) Programme has entailed targeted investment of €14m and the provision of 275 additional therapy staff, to increase services for children with all disabilities,” a spokesperson from the HSE said.
With this reconfiguration of services, the HSE expect to meet the needs of children and young people with all disabilities in a more “efficient, effective, and equitable manner,” the spokesperson added.
Little data is kept on how many children are diagnosed with ASD and how many people with ASD are waiting for a psychologist, an occupational therapist, and a speech and language therapist. An FOI was sent to the HSE asking for numbers of children ages 0-18 diagnosed with ASD in 2016 and it was rejected, citing that “the Health Service Executive does not currently collect information specifically on adults and children identified with autism on a national basis.”
Not all people with ASD have the same needs, so an individualised, patient-centred approach in respect to supports is used. Michelle O’Donoghue, a speech and language therapy lecturer at University of Limerick, said, “I think that one of the things that is important is an awareness and a realisation of the need for individualised support plans because each person is different and may require varying levels of support throughout their life.”
Ms O’Donoghue added that there may be a difference in how two different people with the same diagnoses of autism are treated because specialists take a look at their needs on an individualised basis. Some factors taken into consideration are the person’s personality, environment, and situations they may want to communicate in.
Ms O’Donoghue lived in New Zealand for a number of years and said that the Ministry of Health in New Zealand publishes a regularly updated ASD Guideline for people on the spectrum, their families and friends as well as health and education professionals, with the latest edition published in August 2016. This provides information on good practice that is evidence-based.
There are challenges in figuring out the cost of ASD treatment and how many professionals are needed around the country because some mild Autism or Asperger’s cases go undiagnosed. Some people with mild ASD may not find it productive to wait for an assessment. Data on how many people are diagnosed with autism in Ireland is not being collected.
Currently, there is a petition on Change.org to be sent to the Dáil and Seanad to pass the Autism Spectrum Disorder Bill 2017. This bill would create a national strategy to provide resources and support for children and adults on the spectrum.
* Some names have been changed to protect the identity of individuals who do not wish to be identified.