# When should I worry about Rett Syndrome at age 5?

Canonical: https://pinnacleblooms.org/ask/when-should-i-worry-that-my-5-year-old-might-have-rett-syndrome
Publisher: Pinnacle Blooms Network / Bharath Healthcare Laboratories Private Limited

Rett Syndrome usually shows itself between 6 and 18 months, not at 5 — most often as a child slows or loses hand and speech skills she once had, with repetitive hand-wringing movements. A 5-year-old with steady, ongoing development does not fit this pattern. The key sign at any age is loss of previously gained skills, which always deserves prompt medical and neurological review — not a diagnosis, a reason to assess early.

*If you're reading carefully about your bright, busy 5-year-old, that watchfulness is a form of love — let's bring some clarity to what Rett Syndrome actually looks like.*

## In short
Rett Syndrome usually announces itself far earlier than age 5 — most often between **6 and 18 months**, when a baby who was developing typically begins to slow down or lose skills she once had, especially hand use and spoken words, often alongside repetitive hand movements (wringing, washing or mouthing). If your daughter reached age 5 with steady, ongoing development of speech, play and purposeful hand use, the classic profile of Rett is unlikely. The single most important thing to watch at any age is **loss of skills a child once clearly had** — and that always deserves prompt medical review, not worry alone.

## What Rett Syndrome actually looks like
Rett Syndrome (ICD-11 LD90.0) is a genetic neurodevelopmental condition, most often linked to changes in the *MECP2* gene, and seen almost entirely in girls. Its hallmark is a recognisable pattern over time rather than a single sign:

- **A period of typical early development**, usually for the first 6–18 months.
- **A slowing or regression** — losing purposeful hand skills and any words or babble that had appeared.
- **Stereotyped hand movements** — repetitive wringing, clapping, washing or hand-to-mouth motions.
- **Slowing of head growth** in early childhood.
- **Gait and coordination differences** — unsteady, stiff or wide-based walking.

Because this pattern typically emerges in infancy and toddlerhood, a child whose speech, hand use and play have grown steadily to age 5 does not fit the Rett picture. If, however, your 5-year-old has shown a **loss of language, hand skills or walking** she previously had, or has unexplained repetitive hand movements, this is a reason to see a paediatrician or paediatric neurologist promptly — Rett and several other conditions are best evaluated by a doctor, including genetic testing where indicated.

## When to act
Seek a medical review now if you notice any *regression* — words, gestures or skilled hand use that have faded — repetitive hand-wringing or washing movements, a clear change in walking, or if your own instinct says something has shifted. These are reasons to assess, never a diagnosis, and earlier review means earlier support.

## The Pinnacle way
A clinical [AbilityScore®](/ask/what-is-the-abilityscore-and-how-is-it-calculated) and any diagnosis are formed only at a Pinnacle Blooms Network centre, under qualified clinician care — never from an online list. Because Rett Syndrome is a medical and genetic condition, our clinicians work alongside your paediatrician and neurologist: we build a developmental baseline, support communication and motor skills, and coordinate care around your child's strengths. You can read more about [Rett Syndrome](/rett-syndrome) and how our [occupational therapy](https://www.pinnacleblooms.org/best-occupational-therapy-center-india-proven-improvement-rate) team supports hand use, play and daily skills.

## Trusted sources
WHO ICD-11 classification of Rett Syndrome; American Academy of Pediatrics (healthychildren.org) guidance on developmental regression and when to seek paediatric review; CDC "Learn the Signs, Act Early" milestone resources.

**Next step —** Trust what you've noticed. If you've seen any loss of skills, see your paediatrician promptly, and [book a developmental assessment](https://www.pinnacleblooms.org/enroll-autism-speech-aba-therapies-india) with a Pinnacle clinician for clarity and coordinated support.

This is general information, not a diagnosis — individual assessment and diagnosis require an appropriately qualified healthcare professional.

## Sources
- WHO ICD-11: Rett Syndrome (LD90.0): https://icd.who.int/browse/2024-01/mms/en
- AAP HealthyChildren: developmental concerns and when to seek review: https://www.healthychildren.org
- CDC: Learn the Signs, Act Early: https://www.cdc.gov/child-development

## Connected topics and perspectives
- Conditions: https://pinnacleblooms.org/ask/conditions
- Parent: https://pinnacleblooms.org/ask/lens/stakeholder/parent
- Kinder-5y: https://pinnacleblooms.org/ask/lens/age/kinder-5y
- Context: https://pinnacleblooms.org/ask/lens/domain/context
- Concern: https://pinnacleblooms.org/ask/lens/intent/concern
- Screen: https://pinnacleblooms.org/ask/lens/lifecycle/screen
- Special Education: https://pinnacleblooms.org/ask/lens/route/special-education
- Early Clarity: https://pinnacleblooms.org/ask/lens/empowerment/early_clarity

## Related question paths

### Understand the subject
- How Rett Syndrome Affects a Child's Daily Life: https://pinnacleblooms.org/ask/how-does-rett-syndrome-affect-a-child-s-daily-life
- Is Rett Syndrome considered a disability?: https://pinnacleblooms.org/ask/is-rett-syndrome-considered-a-disability
- Is Rett Syndrome Genetic or Hereditary?: https://pinnacleblooms.org/ask/is-rett-syndrome-genetic-or-hereditary
- What are common myths about Rett Syndrome?: https://pinnacleblooms.org/ask/what-are-common-myths-about-rett-syndrome
- Types and Stages of Rett Syndrome: https://pinnacleblooms.org/ask/what-are-the-types-or-levels-of-rett-syndrome
- What causes Rett syndrome in children?: https://pinnacleblooms.org/ask/what-causes-rett-syndrome-in-children
- What is Rett Syndrome?: https://pinnacleblooms.org/ask/what-is-rett-syndrome
- What is Rett Syndrome, and what does it look like in early childhood?: https://pinnacleblooms.org/ask/what-is-rett-syndrome-and-what-does-it-look-like-in-early-childhood
- Conditions That Occur Alongside Rett Syndrome: https://pinnacleblooms.org/ask/what-other-conditions-often-occur-alongside-rett-syndrome
- Early Intervention Outcomes in Rett Syndrome (Under 7): https://pinnacleblooms.org/ask/what-does-current-research-show-about-early-intervention-outcomes-for-rett-syndrome-in-children-under-7
- What is Rett Syndrome, and its ICD-11 features in early childhood?: https://pinnacleblooms.org/ask/what-is-rett-syndrome-and-what-are-its-icd-11-features-in-early-childhood
- ICD-11 Classification of Rett Syndrome (LD90.0): https://pinnacleblooms.org/ask/what-is-the-icd-11-classification-for-rett-syndrome

### Recognise signs & concerns
- Early Signs of Rett Syndrome in a 5-Year-Old: https://pinnacleblooms.org/ask/what-are-the-early-signs-of-rett-syndrome-in-a-5-year-old
- When should I worry about Rett Syndrome in my 6-year-old?: https://pinnacleblooms.org/ask/when-should-i-worry-that-my-6-year-old-might-have-rett-syndrome
- When should I worry that my 4-year-old might have Rett Syndrome?: https://pinnacleblooms.org/ask/when-should-i-worry-that-my-4-year-old-might-have-rett-syndrome
- When should I worry about Rett Syndrome at 18–24 months?: https://pinnacleblooms.org/ask/when-should-i-worry-that-my-18-to-24-month-old-might-have-rett-syndrome
- When should I worry that my 3-year-old might have Rett Syndrome?: https://pinnacleblooms.org/ask/when-should-i-worry-that-my-3-year-old-might-have-rett-syndrome
- When should I worry that my 2-year-old might have Rett Syndrome?: https://pinnacleblooms.org/ask/when-should-i-worry-that-my-2-year-old-might-have-rett-syndrome
- Can Rett Syndrome Be Cured?: https://pinnacleblooms.org/ask/can-rett-syndrome-be-cured
- Can Rett Syndrome Be Prevented?: https://pinnacleblooms.org/ask/can-rett-syndrome-be-prevented
- Rett Syndrome in Boys: https://pinnacleblooms.org/ask/do-boys-show-rett-syndrome-differently
- Do girls show Rett Syndrome differently?: https://pinnacleblooms.org/ask/do-girls-show-rett-syndrome-differently
- Should I be worried my child might have Rett Syndrome?: https://pinnacleblooms.org/ask/should-i-be-worried-my-child-might-have-rett-syndrome
- Early Signs of Rett Syndrome: https://pinnacleblooms.org/ask/what-are-the-early-signs-of-rett-syndrome

### Explore causes & influences
- Are boys more likely to have Rett Syndrome?: https://pinnacleblooms.org/ask/are-boys-more-likely-to-have-rett-syndrome
- Are girls more likely to have Rett Syndrome?: https://pinnacleblooms.org/ask/are-girls-more-likely-to-have-rett-syndrome
- What Causes Rett Syndrome in Young Children?: https://pinnacleblooms.org/ask/what-causes-rett-syndrome-in-young-children
- Early Intervention for Rett Syndrome, UNCRPD & the SDGs: https://pinnacleblooms.org/ask/how-does-early-intervention-for-rett-syndrome-advance-un-child-rights-uncrpd-and-the-sdgs
- Known contributing factors for Rett Syndrome: https://pinnacleblooms.org/ask/what-are-the-known-contributing-factors-for-rett-syndrome-in-early-childhood
- Cost-effectiveness of early therapy for Rett Syndrome in young children: https://pinnacleblooms.org/ask/what-is-the-cost-effectiveness-of-early-therapy-for-rett-syndrome-in-young-children
- Prevalence and Public-Health Burden of Rett Syndrome in India: https://pinnacleblooms.org/ask/what-is-the-prevalence-and-public-health-burden-of-rett-syndrome-among-young-children-in-india

### Understand assessment
- How AbilityScore Tracks Progress in a Child with Rett Syndrome: https://pinnacleblooms.org/ask/how-does-abilityscore-track-progress-in-a-child-with-rett-syndrome
- How Rett Syndrome Is Assessed in a Young Child: https://pinnacleblooms.org/ask/how-is-rett-syndrome-assessed-in-a-young-child
- How Rett Syndrome Is Assessed in Children Under 7: https://pinnacleblooms.org/ask/how-is-rett-syndrome-assessed-in-children-under-7
- What an AbilityScore® of 0–100 means for a child with Rett Syndrome: https://pinnacleblooms.org/ask/what-does-an-abilityscore-of-0-100-mean-for-a-child-with-rett-syndrome
- What does an AbilityScore of 100–200 mean for a child with Rett Syndrome?: https://pinnacleblooms.org/ask/what-does-an-abilityscore-of-100-200-mean-for-a-child-with-rett-syndrome
- What does an AbilityScore of 200–300 mean for a child with Rett Syndrome?: https://pinnacleblooms.org/ask/what-does-an-abilityscore-of-200-300-mean-for-a-child-with-rett-syndrome
- AbilityScore 300–400 in Rett Syndrome: https://pinnacleblooms.org/ask/what-does-an-abilityscore-of-300-400-mean-for-a-child-with-rett-syndrome
- What an AbilityScore of 400–500 Means in Rett Syndrome: https://pinnacleblooms.org/ask/what-does-an-abilityscore-of-400-500-mean-for-a-child-with-rett-syndrome
- What does an AbilityScore of 500–600 mean for a child with Rett Syndrome?: https://pinnacleblooms.org/ask/what-does-an-abilityscore-of-500-600-mean-for-a-child-with-rett-syndrome
- What does an AbilityScore of 600–700 mean for a child with Rett Syndrome?: https://pinnacleblooms.org/ask/what-does-an-abilityscore-of-600-700-mean-for-a-child-with-rett-syndrome
- What an AbilityScore of 700–800 Means for a Child with Rett Syndrome: https://pinnacleblooms.org/ask/what-does-an-abilityscore-of-700-800-mean-for-a-child-with-rett-syndrome
- What an AbilityScore of 800–900 Means for a Child with Rett Syndrome: https://pinnacleblooms.org/ask/what-does-an-abilityscore-of-800-900-mean-for-a-child-with-rett-syndrome

### Explore therapy & support
- Can a Child with Rett Syndrome Attend a Mainstream School?: https://pinnacleblooms.org/ask/can-a-child-with-rett-syndrome-attend-a-mainstream-school
- Can a Child with Rett Syndrome Attend a Regular School?: https://pinnacleblooms.org/ask/can-a-child-with-rett-syndrome-attend-a-regular-school
- Can a Child with Rett Syndrome Live Independently?: https://pinnacleblooms.org/ask/can-a-child-with-rett-syndrome-grow-up-to-live-independently
- How is Rett Syndrome diagnosed in a child?: https://pinnacleblooms.org/ask/how-is-rett-syndrome-diagnosed-in-a-child
- How is Rett Syndrome supported through therapy?: https://pinnacleblooms.org/ask/how-is-rett-syndrome-supported-through-therapy
- Rett Syndrome AbilityScore®: What to Do Next: https://pinnacleblooms.org/ask/my-child-with-rett-syndrome-has-an-abilityscore-of-0-100-what-should-we-do-next
- Rett Syndrome with an AbilityScore of 100–200: your next step: https://pinnacleblooms.org/ask/my-child-with-rett-syndrome-has-an-abilityscore-of-100-200-what-should-we-do-next
- Rett Syndrome: AbilityScore 200–300 — what to do next: https://pinnacleblooms.org/ask/my-child-with-rett-syndrome-has-an-abilityscore-of-200-300-what-should-we-do-next
- Rett Syndrome: AbilityScore 300–400 — what to do next: https://pinnacleblooms.org/ask/my-child-with-rett-syndrome-has-an-abilityscore-of-300-400-what-should-we-do-next
- Rett Syndrome with an AbilityScore of 400–500: what to do next: https://pinnacleblooms.org/ask/my-child-with-rett-syndrome-has-an-abilityscore-of-400-500-what-should-we-do-next
- Rett Syndrome and an AbilityScore of 500–600: What To Do Next: https://pinnacleblooms.org/ask/my-child-with-rett-syndrome-has-an-abilityscore-of-500-600-what-should-we-do-next
- Rett Syndrome AbilityScore 600–700: What To Do Next: https://pinnacleblooms.org/ask/my-child-with-rett-syndrome-has-an-abilityscore-of-600-700-what-should-we-do-next

### At home & in everyday life
- How can I support my child with Rett Syndrome at home?: https://pinnacleblooms.org/ask/how-can-i-support-my-child-with-rett-syndrome-at-home