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Diagnostic pathways - discovering success

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Lucy Skye

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Hi

We've recently worked with Islington CCG to review the local children's diagnostic pathway.

http://network.autism.org.uk/good-practice/case-studies/reviewing-islington%E2%80%99s-autism-diagnostic-provision-children

There are lots of examples of good practice taking place, but we're keen to uncover more! 

Do you have anything you can share? 

Experiences from other areas are so useful to building strong diagnostic pathways and sharing ideas to improve local support. 

Do you have any advice for others? 

Edited on July 18, 2017 - 2:13pm

AutismAdvocate

July 16, 2018 - 8:20pm

"Do you have any advice for others?"

CAMHS need to listen to parents (also stop looking for problems in the home as a first port of call and stop sending parents on parenting courses).  That would be my most important piece of advice.  Dismissing or blaming parents is highly detrimental to the children and parenting courses naturally cause a long delay which leaves a child struggling in school and generally in their life.

“Doctors Listen Up! Parents Can Spot Autism Long Before Diagnosis”

https://www.autismspeaks.org/science/science-news/doctors-listen-parents-can-spot-autism-longdiagnosis

"Lonnie Zwaigenbaum has devoted much of his career to understanding how to identify autism as early as possible. Despite his years of experience, Dr. Zwaigenbaum says physicians like himself would do well to seek the insights of a more important group of experts – parents. "Parents are the experts when it comes to their kids and their observations are really valuable," Dr. Zwaigenbaum says. "In some respects, parents are picking up on differences at six and nine months of age that we have a much harder time seeing in the clinic."

“Listening to parents can help docs see early autism signs”

http://sfari.org/news-and-opinion/blog/2015/listening-to-parents-can-help-docs-see-early-autism-signs

"Children with autism are typically diagnosed at about age 4, when social deficits and other symptoms set them apart from their classmates. But some children show subtle signs of the disorder as early as 6 months of age. Recognizing these signs is important: Mounting evidence suggests that early intervention can improve social and communication skills in children with autism. The good news is that parents often pick up on these early clues, two new studies suggest, and could help doctors spot the disorder as well. The bad news: Doctors don’t always act on parents’ concerns."

“Doctor Visits May Be Insufficient To Spot Autism”

http://www.disabilityscoop.com/2015/01/13/doctor-insufficient-autism/19957/

"Routine visits to the pediatrician are often far too short to accurately identify children at risk for autism, a new study suggests."

My second piece of advice is to stop looking at the ADOS-2 as the holy grail. It's only 77% clinically reliable in high-functioning individuals, which by default means even less so in those with PDA and females.  Consider other tools such as the DISCO but whichever tool you use do not rely on it.  Conducting an ASD assessment is about expertise not a questionnaire, the tool is only an indicator and a below cut-off result does not rule out ASD.

My third piece of advice is to understand and include relevant familial history or other issues the child has, which are part of a constellation of difficulties which are often co-morbid.  These might include ADHD, Ehlers Danlos syndrome or hypermobility, dyspraxia, dyslexia, OCD, anxiety, dyscalculia etc.  Conditions such as anxiety and OCD should not be allowed to cloud the judgment whereby those conditions are diagnosed by the underlying autism is not.  The DANDA map of neurodiversity is a good place to start.  If a parent is autistic or shows signs of being autistic, or if there is an autistic sibling this is a strong risk factor which must be borne in mind in the assessment.

AutismAdvocate

July 16, 2018 - 8:26pm

Fourth piece of advice is not to tell parents that the child appears to be managing in school so doesn't need a diagnosis.  Aside from the fact that ASD is lifelong and an individual has a right to know, a right to understand themselves, coping can change very quickly and without a diagnosis in place it can make a big difference to supporting the child when they need it.

Despite the fact that support is supposed to be needs-based and not diagnosis-based, the reality is that to obtain an EHCP most LAs insist on a diagnosis and report defining the child's difficulties.  So many autistic children mask in school and LAs do not take parents at their word.

Last piece of advice is, don't assume that you have sufficient expertise just because you trained in administering a tool such as the ADOS.  If the child masks, is female, has PDA, be prepared to possess the humility to hold your hands up and refer onwards to a specialist clinic rather than leave the family with a lack of diagnosis or misdiagnosis.  It's their lives not yours and the implications of your actions are far-reaching, with the potential to cause much misery and detrimental outcomes.  1 in 10 children who see CAMHS are autistic.  There is every excuse to ensure every CAMHS has at least one solid expert in ASD on-site and either taking part or overseeing all assessments.  It's only by pressure being fed to the DoH that more funds will be provided to health trusts, the answer is not to deny diagnosis to high-functioning autistics because it's expensive and your waiting list is too long.  Supply and demand.  Autistic lives matter.