Autism Diagnosis in the United Kingdom: Perspectives of Autistic Adults, Parents and Professionals

Clinicians providing autism diagnoses often use pathologizing language and focus on negative aspects of autism.

“Clinicians providing autism diagnoses often use pathologizing language and focus on negative aspects of autism (Crane et al., 2018; Dwyer et al., under review; Jegatheesan et al., 2010), and the discourse in autism intervention articles regrettably confirms that negative, subjective pathology language is widely employed in this field.”

On average, autistic adults' first suspicions of autism arose at age 33.1 years.

“On average, adults' first suspicions arose at age 33.1 years”

There was a gap of 1.7 years between first consultation and receiving the diagnosis.

“with a gap of 1.7 years between first consultation and receiving the diagnosis”

General practitioners lacked autism knowledge.

“General practitioners lacked autism knowledge.”

Adults expressed that even when families were accepting, misconceptions about autism made support difficult.

“Adults expressed that even when families were accepting, misconceptions about autism made support difficult (Crane et al., 2018; Punshon et al., 2009).”

Diagnosticians were often unable to provide follow-up due to pressure and lack of resources, leaving clients dissatisfied with the conclusion of their diagnosis experience.

“Diagnosticians were often unable to provide follow-up due to pressure and lack of resources (Crane et al., 2018), leaving clients dissatisfied with the conclusion of their diagnosis experience (Jones et al., 2014).”

Some autistic adults found existing autism services unsuitable as they mostly targeted children or adults with high support needs.

“Some autistic adults found existing autism services unsuitable as they mostly targeted children or adults with high support needs (Crane et al., 2018).”

Over 50% of adults in a UK survey had expected the diagnosis, but others described it as a surprise.

“Over 50% of adults in a UK survey had expected the diagnosis (Jones et al., 2014), but others described it as a surprise (Crane et al., 2018).”

Lack of clear pathways to formal support after diagnosis was well-documented from the perspectives of autistic adults, families, and service providers.

“Lack of clear pathways to formal support after diagnosis was well-documented from the perspectives of autistic adults, families, and service providers (e.g. Crane et al., 2018; Griffith et al., 2012; Lewis, 2017b; Raymond-Barker et al., 2018).”

Mothers involved in their adult children's diagnosis expressed positive reactions to the diagnosis, but autistic adults described both positive and negative reactions from their parents.

“Mothers involved in their adult children's diagnosis expressed positive reactions to the diagnosis (Raymond-Barker et al., 2018), but autistic adults described both positive and negative reactions from their parents (Crane et al., 2018; Punshon et al., 2009).”

Qualitative studies involved adults who sought an assessment due to existing concerns, and those were prompted by their parents or partners.

“Qualitative studies involved adults who sought an assessment due to existing concerns (Crane et al., 2018), and those were prompted by their parents (Raymond-Barker et al., 2018) or partners (Lewis, 2017b).”

On average, autistic adults were diagnosed at age 38.9 years.

“were diagnosed at age 38.9”

There was a lack of support after diagnosis.

“Lack of support after diagnosis.”

The pathway to access autism assessment was described as vague and inconsistent.

“Pathway to access autism assessment described as vague and inconsistent.”

Assessment space and materials were not always adapted to adults.

“Assessment space and materials were not always adapted to adults.”