Du comportement à la biologie : le point sur le dépistage et le diagnostic de l'autisme

Meeting minutes

Agenda

1. Welcome by the moderator, Elvis Ndansi
2. Remarks by co-moderator Dr. Bryan Tegomoh and the Chair
3. Introduction of the speaker by Dr. Tegomoh
4. Presentation by Dr. Lum Frundi
5. Testimonies from a parent and a paediatrician in Cameroon
6. Questions and answers moderated by Dr. Tegomoh
7. Closing remarks and summary

Opening remarks

• Elvis Ndansi welcomed participants to the 135th session, noting that the town hall had never skipped a session. He cited the latest CDC estimate of 1 in 31 eight-year-olds identified with autism in US monitoring communities and the WHO estimate of about 1 in 100 children worldwide, and said Cameroon has no national registry, so many children are missed, diagnosed late, labelled stubborn or hidden at home.
• The Chair, Dr. Foma, said friends, family and the community were asking many questions about autism and that it was time to hear from experts rather than rumours. He announced breast cancer as the theme for October.
• Dr. Tegomoh introduced Dr. Frundi as a board-certified paediatrician and integrative medicine specialist, founder of Generational Wellbeing and author of the children's book The Worry Garden, whose work helps families understand children's behaviour, anxiety and nutrition.

Presentation

1. What autism is

Dr. Frundi described autism as a brain that develops differently early in life, so the child perceives, communicates and connects differently. Signs include little babbling, no back and forth interaction, little eye contact or facial expression, intense focus on objects such as lights or fans, repetitive play such as lining up toys, and rigid routines. Because of these behaviours children are often wrongly labelled as bad.

2. A spectrum

No two children with autism are the same. She described levels from children who speak in full sentences (level 1) to those with short phrases (level 2) and those who use one or two words (level 3), which is why treatment must be individual.

3. Why diagnoses have risen

Prevalence has risen from about 1 in 150 to 1 in 31 in the US over some 20 years, which she attributed mainly to greater awareness, broader criteria and earlier screening rather than overdiagnosis. A California study from 1992 to 2016 showed diagnoses shifting from mainly white children to Hispanic and Black children as access improved. Girls are often missed because their signs, such as hair twirling or quiet focus, are less disruptive than hand flapping.

4. Early signs and what else to rule out

Red flags include no babbling by 12 months, no words by 16 months, no two-word phrases by 24 months, no waving, pointing or showing, no response to name, little interest in other children, and loss of skills such as words already learned. A late talker who connects, laughs and responds usually has a speech delay rather than autism. Hearing and vision should be checked first, and regression or abnormal tone calls for evaluation for genetic conditions such as fragile X or Angelman syndrome, metabolic disease or seizures.

5. How autism is diagnosed

There is no single blood test; diagnosis rests on observation and on the parents' account. She described a grandmother's denial delaying a referral. In the US, parents can refer a child directly to early intervention for speech, occupational and physical therapy, while a developmental paediatrician or psychologist carries out a structured evaluation of about two hours and writes a report that targets care to the child's needs.

6. What does not cause autism, and what may

Autism is not caused by bad parenting, cold mothers, a curse, or vaccines including MMR. Many genes contribute and autism runs in families. Factors associated with risk include serious maternal infection with fever in pregnancy, older parental age, gestational diabetes and maternal metabolic health, closely spaced pregnancies and environmental exposures such as pesticides and pollution.

7. Beware of miracle cures

Families have been harmed or indebted by bleach solutions, chelation, hyperbaric oxygen and supplement regimens sold as cures. Lead exposure from chewing non-food items should be tested and treated, and specific deficiencies or proven allergies (for example to casein) addressed, but what helps one child is not a cure for all.

8. What helps

Early speech, occupational and feeding therapy, ideally from 18 months to 2 years, brings better outcomes, together with parent coaching. Sleep problems are common and often linked to a flat melatonin pattern, but reflux, iron deficiency, asthma, seizures and constipation should be ruled out; bedtime routines and melatonin under medical advice help. Sensory sensitivities (clothing tags, noise, chewing sounds, smells) drive meltdowns and feeding problems; children may need earplugs, headphones, weighted blankets or quiet rooms. Children understand more than they can say, so adults should not talk about them in front of them.

9. School, safety and families

Parents should request school evaluations in writing. Children with severe autism are at risk of wandering and drowning, so families need safety plans, alerts to neighbours and identification bracelets. Siblings should be involved and parents need support and communities of other parents. She noted that the WHO caregiver skills training exists and hoped to develop better resources for parents.

Discussion and Q&A

• Moderators' reactions. Dr. Foma said even scientists carry biases about autism and described a relative's worry about her son. Dr. Tegomoh summarised the main messages in French for francophone participants: autism is not the parents' fault, a curse or bad upbringing; there is no blood test and diagnosis begins with observation, with earlier intervention giving better results; and families should be wary of miracle remedies and claims about vaccines.
• Siri Mambo, a mother in Texas, on autism in Cameroon. When her son, now eight, stayed in Cameroon for a year in 2021 at age four, relatives blamed witchcraft and kept taking him to churches and cleansing places. She found few schools or centres able to support children with autism and almost no speech, occupational or behavioural therapy; teachers complained daily about children who could not sit still. Her foundation, less than a year old, educates parents and communities, provides sensory toys and communication devices for non-verbal children, and hopes to work with clinicians on diagnosis.
• Dr. Erica, a paediatrician in Yaoundé and a mother of two boys on the spectrum, on what she sees in clinic. Speech delay is almost always the first complaint, often after families were told to wait. She refers children to a child psychologist for evaluation and an individual education plan, but Cameroon lacks occupational and behavioural therapists and English-speaking speech therapists, so she works with special educators who support children at home and in school. Costs are a major barrier, classes of 35 to 40 make inclusion hard, and she sees marriages strained, with mothers often left to carry care alone.
• Dr. Foma: Cameroon trains doctors and nurses but neglects allied health professions. He proposed a diaspora memorandum to the Ministry urging training of speech and occupational therapists, medical psychologists, social workers and patient navigators. Elvis Ndansi suggested exploring technology, including AI-based speech practice tools, where therapists are scarce.
• Questions on home assessments, stem cell therapy, paracetamol and vaccines in pregnancy, prevalence and genes. Dr. Frundi said assessments by psychologists are available in Cameroon but hard to find. Vaccines and paracetamol in pregnancy have not been shown to cause autism, while an untreated maternal infection may raise risk. Stem cell therapy is not proven, and Dr. Foma added that a clinical trial was negative. WHO estimates about 1 in 100 children in African countries; no single gene causes autism.
• Dr. Franklin Maloba on maternal age, breastfeeding, pregnancy complications and inheritance. Dr. Frundi said parental age over 35 is associated with higher risk, as are gestational diabetes and closely spaced pregnancies (which may deplete folate), but there is no link with breastfeeding and no simple sex-linked or autosomal pattern. Boys are affected about three times as often as girls, and identical twins can differ. Asked about vitamin D, she said there is no link; research on leucovorin for children with folate receptor antibodies is promising but not yet standardised.
• A participant asked how to reassure young parents who see many affected children in diaspora communities. Dr. Frundi said to start with family history: without a known case in either family the risk is low. Parents can reduce risk by not delaying childbearing too long, treating infections in pregnancy and avoiding toxins. She noted that Cameroonian norms of eye contact and greetings make children who do not fit them seem like outsiders.
• How can autism be explained in Cameroon in terms families accept? Dr. Foma said families often ask who caused an illness rather than what it is. Siri Mambo said parent-to-parent stories, plain language ('a different way of seeing the world'), videos and outreach to churches and schools work; at a June outreach, when asked about autism, the first person to answer linked it to witchcraft. Dr. Erica insists that both parents attend when she gives the diagnosis and tells families that a Toyota key cannot start a Ferrari: each child must be parented as the child they are.
• Dr. Obadia Mfuh Kenji: why is autism a target for anti-vaccine claims, and what message works? Dr. Frundi traced the claim to a retracted, flawed paper on MMR whose author was struck off. She reminds parents of the history of measles, rubella and mumps, notes recent US measles deaths, and sometimes agrees a delayed schedule with hesitant parents; Dr. Maloba noted that signs become obvious around the age when vaccines are given, which creates a false link.
• A paediatrician in Nairobi and a child and adolescent psychiatrist in the US on using existing staff. The Nairobi paediatrician said Kenya, with about four developmental paediatricians, trains nurses, clinicians and paediatricians as early childhood development champions to screen during routine visits and use referral pathways. The psychiatrist urged teaching medical students and general practitioners to spot early milestone delays and said clinicians can diagnose autism and refer to therapy without waiting for formal testing. Dr. Frundi agreed and suggested building communities of parents.

Calls to action and closing

• Dr. Tegomoh asked how AI and other technologies could help with early diagnosis and therapy.
• Dr. Foma said children with autism may run on a different operating system that parents need to learn, and said the town hall would prepare a policy statement for the Ministry. He described a patient's mother who regretted delaying her son's diagnosis.
• Elvis Ndansi summarised: recognise early, listen to parents, rule out other causes, reduce stigma, avoid harmful shortcuts and connect families to support as early as possible.

Next meeting

October 2026, on breast cancer (date not announced in the session).

Submitted by the Co-Moderators, Cameroon Town Hall for Healthcare Professionals.