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(UK) Derry: Family of autistic boy finds services 'almost non-existent'

June 29, 2021, Derry Now: Family of son with autism told to 'go to the papers' for help

A County Derry family whose son as a severe form of autism have criticised the support services available to them as 'almost non-existent'. Gavin and Madison Cruise's son Jordan was diagnosed with autism at an early age, and the severity of his condition has seen him slip through the gaps for available support. With the Limavady family unable to secure any form of regular respite care for their son, one doctor advised them their best course of action would be to speak to the media. “The doctor said 'why don't you go to the paper about it?'. I went there to get medication or help, or advice, and I got it. I was told to go to the paper,” Gavin told the County Derry Post. “He was one of the doctors in the community who had been trying to get Jordan respite. He had sent 12 or 16 emails, and they hadn't responded.” Following his diagnosis, seven-year-old Jordan was referred to an ASD social worker, but attempts to link him with available support ran into difficulties…. “He only lasted two sessions, and we had to buy the uniform and she actually asked if we could give it back. “We were then referred to Action for Children, who said they could offer respite. They had a nursery and could do speech and language and different programmes. “A woman called out to the house for an assessment in the home. When she was leaving, I asked about the respite and she said they didn't offer it. “After that, he was referred to the Children's Disability Team to be assessed for an intellectual disability, and he was diagnosed with that as well. “The ASD team was always saying 'wait until you go to the Children's Disability Team, they'll be able to do more for you'. “The ASD team wanted rid of him, but the Children's Disability Team didn't want to take him either. It's hard to explain, but it's unbelievable…. “It was really to do with his severity. I can't really give any other answer, I've thought about it and I can't come up with anything at all.” There has also been a delay in medication promised to Jordan, to help aid his sleep, with a commitment to provide the medicine in March never followed through. Gavin says the experience has left the family feeling let down by the services which were meant to support them, with much-needed respite care never materialising. “Respite would allow us a break, some time to recharge and to get your energy and momentum back up again so you can continue to provide the high level of care you provide day in-day out,” he said. “The Children's Disability Team can maybe give you one overnight every 8-10 weeks, but if another family goes into crisis at the time your son or daughter is scheduled, then you'll be knocked out…. “Going out together can make it more stressful, so it's not your normal brother-sister relationship. She doesn't want Jordan in her room and she tries to keep her distance. “She's always asking 'when's Jordan going to speak?' or 'when's Jordan going to come and play with me?' and things like that.”… While the waiting lists for an autism diagnosis have been widely publicised, Gavin feels not enough thought has been given to what happens after a diagnosis. “We're just waiting and hoping we will get offered respite, and it will be guaranteed and more regular, not just phoning and saying they might have a date some time in August,” he said. “There are no guarantees at all, there really isn't. You see on social media and reports about autism services moving to new premises, and you're scratching your head at it. “It seems to be that everybody is concerned about the waiting list to get an autism diagnosis, but there is no mention of the aftercare.”


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