Assessment & Research

Disordered porphyrin metabolism: a potential biological marker for autism risk assessment.

Heyer et al. (2012) · Autism research : official journal of the International Society for Autism Research 2012
★ The Verdict

Urine porphyrin levels run high in some kids with autism, but the test misses too many cases to stand alone.

✓ Read this if BCBAs who sit on diagnostic teams or guide families through medical assessments.
✗ Skip if Clinicians only providing behavior therapy with no role in medical screening.

01Research in Context

01

What this study did

The team collected urine from kids with autism and from typical kids. They measured two porphyrin molecules: penta and coproporphyrin. The goal was to see if these levels could flag autism risk.

02

What they found

Kids with autism had much higher levels of both porphyrins. The test was good at ruling autism in when levels were high, but it missed most kids with autism. It caught about one in three cases.

03

How this fits with other research

Shandley et al. (2014) looked at the same urine marker and saw no group difference at all. The clash may come from different labs, different age groups, or how urine was stored.

Older work backs the idea that urine can spot autism. Burack et al. (2004) found a unique urine pattern in 77 % of prepubertal boys with autism. Catania et al. (1982) saw a special peptide pattern in half of autistic kids.

A big 2025 review by Baker et al. (2025) pools all urine-metabolite studies. It says the signal is real but still too shaky for clinic use.

04

Why it matters

You can add porphyrin testing to your medical work-up if parents want extra biological data. Tell them it is not a yes-or-no test; it is a clue. Use it alongside ADOS, parent reports, and doctor checks. If levels are high, consider further metabolic or environmental screening.

Free CEUs

Want CEUs on This Topic?

The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.

Join Free →
→ Action — try this Monday

Add a porphyrin fact sheet to your parent resource folder so you can explain why the pediatrician might order this extra test.

02At a glance

Intervention
not applicable
Design
other
Sample size
76
Population
autism spectrum disorder, neurotypical
Finding
positive

03Original abstract

Autism (AUT) is a complex neurodevelopmental disorder that, together with Asperger's syndrome and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), comprises the expanded classification of autistic spectrum disorder (ASD). The heterogeneity of ASD underlies the need to identify biomarkers or clinical features that can be employed to identify meaningful subtypes of ASD, define specific etiologies, and inform intervention and treatment options. Previous studies have shown that disordered porphyrin metabolism, manifested principally as significantly elevated urinary concentrations of pentacarboxyl (penta) and coproporphyrins, is commonly observed among some children with ASD. Here, we extend these observations by specifically evaluating penta and coproporphyrins as biological indicators of ASD among 76 male children comprising 30 with validated AUT, 14 with PDD-NOS, and 32 neurotypical (NT) controls. ASD children (AUT and PDD-NOS) had higher mean urinary penta (P < 0.006) and copro (P < 0.006) concentrations compared with same-aged NT children, each characterized by a number of extreme values. Using Receiver Operating Characteristic curve analysis, we evaluated the sensitivity and specificity of penta, copro, and their combined Z-scores in ASD detection. The penta sensitivity was 30% for AUT and 36% for PDD-NOS, with 94% specificity. The copro sensitivity was 33% and 14%, respectively, with 94% specificity. The combined Z-score measure had 33% and 21% sensitivity for AUT and PDD-NOS, respectively, with 100% specificity. These findings demonstrate that porphyrin measures are strong predictors of both AUT and PDD-NOS, and support the potential clinical utility of urinary porphyrin measures for identifying a subgroup of ASD subjects in whom disordered porphyrin metabolism may be a salient characteristic.

Autism research : official journal of the International Society for Autism Research, 2012 · doi:10.1124/mol.110.069831