A mother from Greater Manchester has spent more than five years seeking an official autism diagnosis for her 14-year-old daughter, highlighting ongoing challenges in accessing timely assessments within the public health system. Rosalyn, a 53-year-old medical worker from Trafford, said the prolonged delay has had significant repercussions on her daughter's education and well-being.

Rosalyn’s daughter, Imogen, began showing signs of social and sensory difficulties around the age of eight. With a strong family history—Rosalyn and Imogen’s three older siblings have all been diagnosed with autism—the mother suspected her youngest child was also on the spectrum. Imogen’s school recognized challenges and initiated information gathering to support a referral, a process that took approximately 18 months.

Despite the referral being submitted with hopes of securing a diagnosis before Imogen started secondary school, the assessment was not promptly scheduled. Rosalyn reported that the Trafford Autism and Social Communication Pathway did not progress the referral for an extended period. It was only on March 27, 2023—more than five years after concerns first arose—that Imogen was placed on the waiting list for evaluation.

Since then, the family has faced a further waiting period of around a year without receiving a final diagnosis. Rosalyn expressed frustration at the lack of communication and slow progress, noting that delays in obtaining a diagnosis limit access to essential support services. Without a formal diagnosis, Imogen is ineligible for an education, health, and care plan (EHCP), which would provide tailored assistance at school. Furthermore, she may miss out on financial support such as disabled students' allowance for university or personal independence payment (PIP) if needed.

Rosalyn criticized the current system for exacerbating health inequalities, pointing out that families with greater financial means can pursue private diagnoses to bypass long public waitlists. “You are simply driving people towards self diagnosis, which is then creating a health inequality,” she said.

Imogen, who is currently preparing for her GCSEs, has experienced a significant decline in mental health, according to her mother. Rosalyn emphasized that most individuals seek an autism assessment after years of struggling to understand their differences rather than as a trend. She described the impact on Imogen’s daily life, including her difficulties with behavior, sensory sensitivities, and social interaction. “She doesn’t leave the house. She’s 14. She should be out living her best life and she isn’t. And that makes me mad,” Rosalyn said.

Rosalyn noted that Imogen’s older siblings received their diagnoses more quickly through different referral pathways, illustrating inconsistencies in service accessibility. The family’s experience underscores broader concerns about the sufficiency of autism assessment provisions in Trafford and the wider region.