A mother from Greater Manchester has described a prolonged struggle to obtain an autism diagnosis for her 14-year-old daughter, Imogen, a process that began five and a half years ago. The mother, Rosalyn, works in the medical profession and was herself diagnosed with autism at age 39. She recognized early signs of autism in her youngest child around age eight, including difficulties with socialization and sensory sensitivities, particularly given that three of her other children had already received autism diagnoses.
After the school identified concerns and began collecting information for a referral—a process requiring approximately 18 months—the referral was submitted to Trafford Autism and Social Communication Pathway. The pathway then delayed action on the referral for an extended period while conducting multidisciplinary meetings to determine acceptance. Imogen was finally accepted onto the waiting list on 27 March 2023, nearly two years after the initial referral process began. Following acceptance, the family encountered further delays, with projected wait times repeatedly extending from 12 months to 18 months to 24 months as they sought updates.
During this extended waiting period, Rosalyn reported that her daughter’s mental health deteriorated, with new issues emerging that had not been present when the referral was initially made. After approximately three and a half years on the waiting list, a strongly worded email from the mother prompted the pathway to expedite Imogen’s assessment. An evaluation eventually occurred roughly one week before the interview, though results had not yet been provided.
Rosalyn emphasized the significance of obtaining a formal diagnosis, noting that it affects access to educational support, including education health and care plans and disabled students’ allowances for university. Without a diagnosis, she explained, evidence for support eligibility is undermined. She also highlighted broader inequities in the diagnostic system, pointing out that those with financial resources can access private diagnoses while others cannot, creating disparities in access to recognized support.
Rosalyn expressed concern about the consequences of diagnostic delays, including the development of self-diagnosis and the emotional toll on her daughter, who she described as not leaving the house at age 14 due to unaddressed support needs.
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