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(Ireland) Parents spend six years trying to get autism diagnosis/services for son

Mar 18, 2020, Journal: Opinion: 'We battled to have our son's autism diagnosed - how might the delay have affected him?' TWO YEARS AGO, our son was suicidal. He was 11 years old. It’s impossible to describe the emotions that hit you when your child tells you this. It’s not something you expect to hear from a child so young and you’re so unprepared on what to do or say in that situation. We tried to stay calm for him, but we were devastated. I couldn’t sleep. I kept checking him at night, I was terrified he might go through with it when we weren’t watching him. He had no friends and never felt like he fit in. As a toddler he was obsessively interested in superheroes, could tell you so many random facts about them. He never sat still but we just thought he was a bit hyper and would settle once he got into school. He was very articulate and spoke so eloquently. He could talk for hours on the topics he was interested in but would never hold a normal two-way conversation…. When he started school the teacher and principal advised that we send in an application of need to the HSE. That was March 2012 and he had just turned 5 years old. A few months later, he was seen by a HSE psychologist and they sent me paperwork stating he had an “as yet undetermined impairment”. It was recommended that he have a team assessment with the Child and Adolescent Mental Health Service (CAMHS). A few weeks later we were advised that CAMHS did not accept the referral but would re-examine it after we attended a parenting course. He was discharged from the service. We immediately found a six-week parenting course, completed it and my son was put on a waiting list to be seen by CAMHS. It took two years waiting to be seen by them and he received five sessions…. He was then discharged from their care, and we had to start the whole process again. It was now 2015, over three years after we had started this journey and we still had no answers…. After two years of waiting, in 2017, I lodged a complaint about the delay to the HSE under section 14 of the Disability Act. It took 11 months to get a response to the complaint itself. While this complaint was upheld, it made no difference whatsoever. We continued to wait…. I was told by the HSE that being assessed privately would be a waste of money as he wouldn’t be entitled to any supports and would still have to wait to be seen through the HSE. … I contacted a solicitor and told him everything. He was horrified we had no answers six years after starting the process. That October, we took the HSE to the High Court to get a judgement order to force them to complete his assessment. He received the assessment four weeks later and was diagnosed with autism towards the end of 2018. It wasn’t a shock at that stage. We already knew he had autism; his teachers knew he had autism. It was finally official. … …Unfortunately, since then we haven’t received a single service that was recommended for him, no occupational or speech and language therapy, no psychology and that was 15 months ago. We’ve given up on the HSE. They won’t help us. We’re now paying privately for speech and language as well as occupational therapy sessions when we can afford them. He is in first year in secondary school now. The school have been fantastic. They’ve arranged a laptop for him and an SNA who has been a great help. He’s like a different child. He still has such a long way to go but he is so much happier now than he was. It should not have taken this long to get him to this position….


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