Off a Cliff, Without a Parachute: Parents Left in the Cold When It Comes to Kids with Autism


Newswise — First-line health professionals must vastly improve their communication and engagement with parents if they are to help address the growing prevalence of autism among children, say researchers from the University of South Australia.

Undertaking a meta-synthesis of 22 international studies, researchers consolidated the voices of 1178 parents advocating for their children with autism, finding that parents feel ignored and dismissed by medical practitioners as they navigate initial concerns for their child, further investigations, and finally, a formal diagnosis of autism.

Researchers say that medical practitioners need to adopt a family-focused approach to ensure that parents’ concerns, perspectives and observations are taken seriously so that their child has appropriate and timely access to early intervention services.

Autism spectrum disorder (ASD) is a persistent developmental disorder characterised by social difficulties, restricted or repetitive patterns of behaviour, and impaired communication skills. The symptoms can range from mild to severe, with early signs often evident from early childhood.

Autism is one of the most prevalent developmental conditions among children, with one in 70 people in Australia on the spectrum, an estimated 40 per cent increase over the past four years. Internationally, statistics are higher with one in 59 children on the spectrum.

UniSA lead researcher, Dr Kobie Boshoff, says the parent advocacy role is critical and must be taken more seriously by medical practitioners.

“Parents are natural advocates for their child, making them an invaluable source of information when it comes to complex diagnoses for invisible disabilities like autism,” Dr Boshoff says.

“Yet parents are increasingly finding the diagnosis process overly stressful and complicated.

“In this study, parents commonly reported their concerns for their child were not being heard or taken seriously by medical professionals. They said they felt confused, stressed and frustrated at the lack of support and understanding.

“They also reported lengthy delays in receiving a diagnosis for their child, as well as a variety of unsatisfactory explanations as alternatives to autism. As access to early intervention services is essential for improving the development outcomes of children with autism, this too is unacceptable.”

Dr Boshoff says first-line medical professionals and service providers must recognise both the role of parents as advocates for their child, and the importance of the parent-practitioner role, which can significantly impact future relationships with other professionals.

She says to build trust medical practitioners must reassess the way they talk and engage with parents.

“First line health professionals and diagnostic services must ensure emotional support is provided to parents throughout the diagnosis process, engaging parents as partners and taking their concerns seriously,” Dr Boshoff says.

“Autism spectrum disorder is a lifelong developmental condition. A positive experience in the early stages of diagnosis can deliver better relationships with future professionals, and most importantly, secure better outcomes for the children.”

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Media: Annabel Mansfield: office +61 8 8302 0351 | mobile: +61 417 717 504 email: Annabel.Mansfield@unisa.edu.au Lead Researcher: Dr Kobie Boshoff office: +61 8 830 21089 | kobie.boshoff@unisa.edu.au

NOTES TO EDITORS:

Dr Kobie Boshoff will also be presenting this topic at the Healthy Development Adelaide event ‘Research and Developments in Autism: A SA Perspective.’ On Wednesday 30 October 2019, rom 5:30pm – 8:00pm. This is a free event open to everyone.

 

Some examples of additional supporting quotes from parents (sourced from various papers included in this study):

 

  • “Why didn’t people take my concerns seriously? Why didn’t the doctor believe what I said and help me sooner?” (Luong et al., 2009, p. 226)
  • “…It just seems to take an awfully long time to diagnose and its valuable time early on. A lot of time is wasted” (Coke et al., 2013, p. 28)
  • “…I feel like I was let down…I feel like they should have listened to me more” (Ryan & Salisbury, 2012, p. e381)
  • “There is nothing wrong with your child” or “This is just a stage that he will eventually grow out of” (Altiere & von Kluge, 2009, p. 144)
  • “When I first presented with my children, I had to tell them what to do and that was the frightening part…could not tell me what to do with them...We lost tremendous amount of time. You could not speed anything up” (Sperry et al., 1999, p. 27)
  • “… and so, I took him to my GP and said, “You know the nursery school have suggested I bring him to you because he won’t rest in the afternoon”. And she was “Like oh well, my daughter is four and she won’t rest in the afternoon either.” (Ryan & Salisbury, 2012, p. e390)
  • “I kept asking the paediatrician [about her child], and he said Oh, he’s just a slow developer or he’ll catch on” (Coke et al., 2013, p. 28)
  • “I was willing to entertain it, but at the time, I didn’t think it was that serious because he didn’t have, you know, he makes eye contact, and he smiles a lot, and he likes to be around people...at the time my knowledge of autism was so limited” (Hoogsteen & Woodgate, 2013, p. 19)”
  • “If he was physically handicapped, people would understand and would be kind. Because he looks like a normal child, people don’t see the autism and don’t understand" (Midence and O”Neill, 1999, p. 280)
  • “It felt like you’re taken to the edge of a cliff. You’ve been given the diagnosis, you got shoved off the end and then it was “oh, by the way, we haven’t got the parachute. You’ll need to get that for yourself.” You feel like you finally got there and you’re quite happy, you’re ready to fly, but then all of the sudden, you don’t have the rest of the equipment you need to fly with.” (Mulligan et al., 2012, p. 318)
  • “..it was a year sorting through all this. It was so frustrating. We were going in circles” (Stoner et al., 2005, p. 41)
  • “She said, from there, ‘there is really nothing more that you can do … Goodbye and good luck’, What she gave was sort of nothing … no hope (Mozourou et al., 2011, p. 703)

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