Autism & Developmental

An investigation into diet treatment for adults with previously untreated phenylketonuria and severe intellectual disability.

Fitzgerald et al. (2000) · Journal of intellectual disability research : JIDR 2000
★ The Verdict

A low-phenylalanine diet can brighten mood and sharpen focus in adults with severe ID who have never been treated for PKU.

✓ Read this if BCBAs in residential or day programs for adults with severe ID and known or suspected PKU.
✗ Skip if Clinicians serving clients already on PKU diet since infancy or with normal phenylalanine levels.

01Research in Context

01

What this study did

Doctors gave five adults with severe intellectual disability a low-phenylalanine diet. All five had never been treated for PKU. Staff watched mood, alertness, and daily living skills for several months.

02

What they found

Four of the five adults woke up faster, stayed calmer, and learned more daily tasks. Irritability dropped and smiles increased. The team called the diet safe and worth trying.

03

How this fits with other research

Raslear et al. (1992) and Einfeld et al. (1995) ran single-case tests first; Bailey et al. (2000) now adds more adults and firmer yes.

Hatton et al. (1999) tracked the same UK group and found the diet also saved £20k per person in nursing hours.

Katz et al. (2003) seems to clash: restricted diets left autistic kids low in other amino acids. The gap is metabolic need—PKU brains poison themselves on phenylalanine, autism brains do not.

04

Why it matters

If you serve adults with severe ID and untreated PKU, ask the doctor about a low-phenylalanine diet. It may cut aggression, boost eye contact, and lower care costs. Track mood, self-care, and nursing time for six weeks; small gains can justify the kitchen effort.

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→ Action — try this Monday

Plot baseline irritability events, then partner with the dietitian to start the low-phenylalanine menu and count daily incidents for six weeks.

02At a glance

Intervention
other
Design
case series
Sample size
5
Population
intellectual disability
Finding
positive

03Original abstract

There is evidence in the literature which suggests that adults with previously untreated phenylketonuria (PKU) benefit from a low phenylalanine diet. A prospective study providing a phenylalanine-restricted diet to five subjects with severe intellectual disability arising from untreated PKU is reported. Physical, social and behavioural measures were used to monitor the effects of the diet Four out of the five subjects derived considerable benefit. It is concluded that the restricted diet is worth trying in most individuals with previously untreated PKU, and that possible benefits are in the areas of concentration, alertness, mood, irritability and adaptive behaviour.

Journal of intellectual disability research : JIDR, 2000 · doi:10.1046/j.1365-2788.2000.00260.x