A mother from Trafford, Greater Manchester, has described a five-and-a-half-year battle to secure an official autism diagnosis for her 14-year-old daughter, Imogen. Rosalyn, 53, who has three other children with autism diagnoses and was diagnosed herself at 39, noticed her youngest child's socialising and sensory issues around the age of eight.
The school began collecting information for a referral, a process that took approximately 18 months. The referral was then sent to the Trafford Autism and Social Communication Pathway. Rosalyn stated that the pathway "sat on the referral for a while," with multidisciplinary meetings taking months to decide on acceptance. Imogen was finally accepted onto the waiting list on 27 March 2023, two years after the referral.
Rosalyn reported that the estimated waiting time for an appointment increased from 12 months to 18 months, then to 24 months. During this period, she said, her daughter's mental health deteriorated. After Rosalyn, the GP, and the school wrote multiple times, a strongly worded email from Rosalyn six months ago, detailing her daughter's mental health problems, led to an expedited appointment about a week and a half ago. However, a diagnosis result is not yet available.
Rosalyn emphasised the importance of a diagnosis for understanding and accessing support, stating that "quite a lot of doors are shut to you if you don't have a diagnosis." She noted that without a diagnosis, Imogen lacks an education health and care plan (EHCP) for school support and would not qualify for a disabled students' allowance or a personal independence payment if needed.