Extended family members discriminate against autistic people, new research suggests.
Speech therapist Dr Natalie Thayer found some family members do not want to learn about the condition or help the immediate family.
Thayer, of Towson University in Maryland, looked at parental perceptions of community and professional attitudes towards autism.
Dr Natalie Thayer’s research found extended family members can turn their backs on parents struggling with an autistic child
She worked with fellow speech therapist Dr Kaitlyn Wilson and social work specialist Dr Christina Marsack-Topolewski.
‘They don’t want to understand’
Their study looked at survey responses from 320 parents of autistic adults.
Fifty-one of the parents also took part in phone interviews.
One father, Michael, spoke about his extended family and friends. He said: “They don’t understand, and they don’t want to understand.”
He added that they did not bother to “educate themselves about the issue”.
Feelings of isolation
The researchers wrote that Michael’s experience was “common across participants and caused many parents to report feelings of isolation within their communities”.
In an email, Thayer wrote that she encouraged families to connect with other families.
“Many families find it helpful to use the power of social media to connect with others who have similar life experiences,” she wrote.
Excluded altogether
Professionals can help by educating society about autism and by improving community support services, she added.
The findings suggest that sometimes people on the autism spectrum and their families can be excluded altogether by extended family members, parents’ friends and peers.
This includes not being invited to events, being invited on condition the autistic person does not come, and losing friends who cannot relate to their different child-rearing experiences.
Other issues include problems finding a romantic partner and difficulties getting help with childcare.
‘Need for better understanding’
Anoushka Pattenden is a research manager at the National Autistic Society (NAS).
She said the study has some limitations, but highlights “the need for better understanding of autism and better provision of services”.
As well as the many negative experiences revealed in the study, parents also relayed positive ones.
Valuing strengths
Some spoke of people in the wider community valuing their child’s strengths and accommodating their differences.
They told how this support helped the child develop socially, academically and, later, in work.
The research was published in the Journal of Autism and Developmental Disorders.
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Published: 24 October 2024
