Parents wait too long for autism help

The sooner, the better. Or as the New Zealand Autism Spectrum Disorder (ASD) Guideline puts it, ‘‘The earlier the diagnosis of ASD is made, the more impact early intervention has, resulting in fewer challenging behaviours and better outcomes for families.’’

That seems completely straightforward. Experienced clinicians are able to diagnose moderate to severe ASD in children at age two or three. Less severe ASD, which is masked by better language skills, tends to be picked up later.

And as it is a disorder that affects childhood development, time is of the essence, as the guideline states: ‘‘International research demonstrates improved cognitive and functional outcomes for children who were diagnosed at younger ages and who then received appropriate early intervention educational support.’’

But there is best practice and then there is the reality of a health system overwhelmed by the rapidly growing prevalence of ASD. It is thought to affect roughly one in 100 people, according to the Ministry of Health. Other jurisdictions offer less conservative numbers – the Centers for Disease Control and Prevention in the US have estimated that ASD affects one in 68 children, with five boys affected for every girl. That may have missed many girls who avoided a diagnosis by ‘‘camouflaging’’ their symptoms.

The jury is still out on whether ASD is actually increasing. It may be that earlier definitions were too narrow for the full spectrum of the disorder. All that can really be said for certain is that the study of ASD is a rapidly changing field. That is not a thought that offers much comfort to parents.

The New Zealand ASD Guideline also warns that primary care practitioners sometimes try to reassure parents by suggesting the developmental delays will resolve themselves, or will discredit the observations of parents. But only a small number of children ‘‘catch up’’ without intervention; the rest simply have their potential diagnosis and treatment delayed.

Autism New Zealand estimates that waiting times for assessments typically range from nine to 18 months. This is what Wellington woman Prudence Williams means when she says she is losing precious time while waiting for an official diagnosis for her 2-year-old daughter, Matilda.

Her experience is far from unusual. Parents often find themselves in a vacuum of official information and guidance while they wait for assessments; they will tend to join online and real-world networks, swap stories, read books and look into various forms of private therapies, not all of which are reputable. They try to comprehend a confusing range of charities, community groups, therapists and medical practitioners.

It is a sad but unfortunate truth that parents who are better off, better educated and more assertive are more able to make their way through a flawed system.

An 18-month delay means young children could wait half their lives for a proper diagnosis. Autism NZ has heard anecdotally that waiting times can stretch to three years. This is clearly not good enough, and our public health providers seem to be aware of their shortcomings. As Capital & Coast District Health Board provider services interim director Joy Farley told Stuff, an increasing number of complex referrals have affected the wait times at all district health boards.

Providers tell us that demand continues to exceed available resources. That means children and families must put up with anxious, frustrating months of uncertainty and worry.