Atlas›Domain X · Body, movement, breath & physical›Guide 091
Guide X-091

Doman-Delacato patterning (contested)

Glenn Doman, Carl Delacato1955Philadelphia
A 32 · L 61 · M 719 interventions in the Trinity explorer11 described for recognition only
Client cardCompare
[source: …] where a claim comes from[uncertain] not confirmed in a primary source[synthesis] the writer's reconstruction

1. Introduction

Version followed: the programme as published by the Institutes for the Achievement of Human Potential (IAHP): the components listed in the 1960 JAMA paper by Doman and colleagues (as secondary sources report it), Glenn Doman's book What To Do About Your Brain-Injured Child (1974, revised 2005, Square One Publishers; contents as the publisher describes them), and the course names IAHP lists today. This guide describes the programme so that you can recognise it and support families. It is not a method a psychotherapist delivers, and nothing here is an instruction for carrying it out.

Status: contested. The American Academy of Pediatrics (AAP) has warned against patterning since the 1960s. Its 1999 policy statement said the treatment rests on an “outmoded and oversimplified theory” of brain development and that its use “continues to be unwarranted” [source: AAP Committee on Children With Disabilities 1999, as quoted by ASAT; bibliographic record: Albert Einstein College of Medicine research portal]. The AAP listed the statement as reaffirmed in January 2006 [source: AAP list of reaffirmed and retired publications, Pediatrics (Ed esp) 2006]. The full professional record and the documented harms are in the Harm account below.

What it is. A home programme run by parents for children whom IAHP calls “brain-injured” or “hurt”. A 2007 news report listed the conditions IAHP includes under that word: cerebral palsy, intellectual disability, epilepsy, Down syndrome, ADHD and autism [source: 6abc Action News 2007]. The programme was developed by Glenn Doman, a physical therapist (University of Pennsylvania degree, 1940) [source: Square One author page], and Carl Delacato, an educational psychologist. They drew on the 1940s pattern-movement ideas of the neurosurgeon Temple Fay [source: Wikipedia, IAHP]. IAHP was founded in Philadelphia in 1955 [source: Square One; Wikipedia, IAHP] and is now based in Wyndmoor, Pennsylvania. Janet Doman has been its director since 1980 [source: 6abc 2007; GuideStar]. Doman's nephew Robert Doman runs a separate organisation, the National Academy of Child Development (NACD), in Utah. Both organisations say they are not associated [source: Novella 1997, NZ Skeptics].

Core idea of change (the developers' claim, not established fact). The theory is called “neurological organisation”. It holds that each child must pass in order through movement stages (such as crawling and then creeping), that these stages repeat human evolutionary history, and that a child who missed or failed a stage is developmentally stalled. Moving the child passively through the missing stage's pattern, together with intense sensory input, is claimed to impose that pattern on the brain and so “organise” it [source: Novella 1996, theness.com; Wikipedia, Psychomotor patterning]. IAHP states that the brain has “tremendous plasticity” [source: GuideStar profile]. Critics point out that the recapitulation idea has been abandoned in biology, and that no known mechanism links passive limb movement to cortical development [source: Novella 1996; Novella 1997].

Your role. Your role is with the parents and family, not with the child's body. You support decision-making, hope, grief and family strain. You coordinate, with consent, with the child's paediatric team. You hold safeguarding in mind. And you help families who are leaving the programme or who were harmed by it [synthesis].

2. Framework

This is a programme run by an institute, not a psychotherapy. Its published structure is as follows. Entry is through the parents. The child's treatment is designed by IAHP and delivered at home by the family.

Phase A: parent course (entry). Both parents must complete a five-day course before IAHP will evaluate the child, because the parents will carry out the programme [source: 6abc 2007]. The course is currently called What To Do About Your Brain-Injured Child. IAHP describes it as a comprehensive course for improving the child's mobility, intelligence, social growth and health [source: GuideStar]. In 2007 the course cost at least US$1,600 per couple [source: 6abc 2007; current fees not verified].

Phase B: evaluation of the child at IAHP. IAHP evaluates the child after the parents' course [source: Wikipedia, IAHP]. The 2007 fee was US$3,000 [source: 6abc 2007]. Doman's book describes the tools IAHP uses to measure visual, auditory, tactile, mobility and manual development, set out as a developmental profile [source: Square One publisher description]. A home programme is then prescribed.

Phase C: home programme. The parents carry out the programme daily at home, with volunteers recruited to help with the passive-movement element [source: Vail 1967 memo enclosing the AAP and American Academy of Neurology statement; Novella 1997]. The component list is in section 4A. IAHP also names an Intensive Treatment Program, but its GuideStar profile does not describe it [source: GuideStar] [uncertain: content unknown].

Phase D: re-evaluation and revision. Families return to IAHP for re-evaluation, and the programme is revised [source: 6abc 2007, which describes a family's return visit after the child regressed; the formal revisit schedule is uncertain].

Session count and format. No source publishes a fixed course length [uncertain: not verified]. The programme continues as long as the family continues it. Sources describe it as demanding, daily and taking up a large share of family life [source: Vail 1967; Novella 1997]. No session plan is given here.

Criteria for moving on. Progress is judged on IAHP's developmental profile. A child's move into the next movement stage is the developers' marker of progress [source: Square One description; Novella 1996]. The specific criteria were not verified in the sources [uncertain]. IAHP's published outcome figures are self-reported, and its profile marks them as no longer tracked [source: GuideStar].

Related IAHP programmes (not patterning). IAHP also runs courses for parents of children without disabilities. These include How To Multiply (early reading, baby mathematics, foreign language, music and “encyclopedic knowledge”) and The Newborn Course [source: GuideStar]. They sit alongside Doman's Gentle Revolution book series, which includes How To Teach Your Baby To Read and How To Teach Your Baby Math [source: Square One]. The Better Baby Institute, now part of IAHP, exposed infants to flashcards from about three months of age [source: Wikipedia, IAHP].

Your own work with a family [synthesis]. Your work usually falls into one of three phases, depending on where the family is when you meet them:

  • Considering: the family is deciding whether to take up the programme. Your aim is an informed, unpressured decision, made together with the child's own doctors.
  • In the programme: your aims are to monitor the family's load, the child's welfare and assent, and medical safety; to keep links with the paediatric team; and to support the parents.
  • After the programme: your aims are to help the family with grief, guilt, money and relationship repair, and to help them re-engage with evidence-based services.

You move from one phase to the next when the family's decision changes, not on a schedule.

3. Guiding principles

The developers' stated principles (attributed; for understanding what families have been told)

  • The brain can change. IAHP stresses neuroplasticity [source: GuideStar; 6abc 2007, quoting an IAHP consultant neurologist]. Practical meaning: parents may hear any other view as “giving up”, so validate their hope before you discuss evidence.
  • “Hurt”, not “damaged”. IAHP describes children as “hurt” rather than “damaged” or “diseased” [source: GuideStar; 6abc 2007]. Practical meaning: families may use IAHP's vocabulary. Use their words to understand them, and the child's actual diagnosis when you coordinate care.
  • Parents are the treatment providers. The parents run the programme at home [source: 6abc 2007; Novella 1997]. Practical meaning: any shortfall is easily experienced as the parent's failure. The 1967 AAP and American Academy of Neurology statement warned that “Failure, therefore, may implicate parents” [source: Vail 1967 memo].
  • Intensity and exactness. The National Down Syndrome Congress criticised IAHP's requirement that parents follow the technique in exact detail [source: neurodiversity.net summary of the NDSC position]. Practical meaning: expect rigid routines and fear of “breaking” the programme.
  • Results judged by the developers' own measures. “Results — The Only Thing That Matters” is a chapter title in Doman's book [source: Square One table of contents]. Practical meaning: families may judge progress on IAHP's profile and not on the child's comfort, participation or independent clinical assessment.

Principles for the psychotherapist

  • Parents decide; you inform and support [synthesis]. Practical meaning: never argue a family out of the programme or shame them. Make sure they have the professional positions and the questions to ask.
  • Never advise starting or stopping medical care [synthesis, consistent with the notes on anticonvulsants in section 4]. Practical meaning: any change to seizure medication, diet, fluids or therapy goes to the child's paediatrician or neurologist. You prompt that conversation.
  • State evidence as the professional bodies state it [source: AAP 1999 as quoted; ASAT]. Practical meaning: quote the AAP position accurately and attribute the IAHP claims as IAHP's. Make no promises about any developmental outcome.
  • The child is the patient of someone else, and their welfare is paramount [synthesis]. Practical meaning: keep the child's distress, assent, rest, play, schooling and medical care in view, and follow your local safeguarding procedures.
  • Work with the whole family system [source: AAP concerns about parental and sibling relationships, as summarised by neurodiversity.net; Novella 1997]. Practical meaning: ask about siblings, the couple, money, sleep and the volunteers.
  • Collaborate, don't compete [synthesis]. Practical meaning: with consent, keep in contact with the child's paediatrician, physiotherapist, occupational therapist (OT), speech and language therapist and school.
  • Stay within competence and keep boundaries on touch. Mainstream codes require practice within competence and referral (APA 2.01; UKCP items 23–24; BACP 2018 para 13). None of these codes addresses touch directly, and all of them prohibit sexual contact [source: professional codes as listed in Sources]. Practical meaning: you do not handle the child or join a family's patterning team. Doing so would create a dual relationship and take you outside your competence [synthesis].

4. Intervention inventory

This inventory has two parts.

  • Part 4A lists the programme's components as the developers published them. They are described so that you can recognise them and talk about them with parents. They are not steps to carry out, and no movement procedures, schedules or timings are given. Under each component, “Steps” means your steps as the psychotherapist when the component comes up.
  • Part 4B gives your own interventions with the family. Most of these are [synthesis], built on the sourced concerns.

All example language is illustrative.

4A. Programme components as published

The 1960 JAMA paper listed these components: patterning, crawling and creeping, receptive stimulation (visual, tactile and auditory), expressive activities, masking, brachiation, and gravity and antigravity activities [source: Doman et al. 1960 as summarised in Wikipedia, IAHP]. The same summary also reports eye exercises for convergence and divergence, light flashing for amblyopia, loud auditory stimulation, identifying objects by touch, and a diet restricting fluids, salt, sweets and “thirst provoking” foods [source: Wikipedia, IAHP, citing the 1960 paper] [uncertain: secondary, unverified].

4A.1 Parent course and child evaluation

  • Purpose (developers' claim): to train parents to run the programme and to assess the child's developmental level on IAHP's profile [source: GuideStar; Square One].
  • What it involves (descriptive): both parents attend a multi-day course; the child is then evaluated and a home programme is prescribed [source: 6abc 2007].
  • Steps for you [synthesis]:
    1. Ask what the parents were told about their child's diagnosis and prognosis, and by whom.
    2. Ask what they hope for, and what the costs and travel will mean for them.
    3. Ask whether the child's paediatrician knows about the plan.
    4. Offer to help them prepare questions for both IAHP and the paediatric team.
  • Example language (illustrative): “Before you go, it might help to write down what you want to ask them, and what you want to ask your daughter's own doctors. Shall we do that together?”
  • Watch for: pressure to commit quickly; being asked to keep the programme from the child's doctors; being told not to take part in independent evaluations. Wikipedia reports that IAHP told parents this, citing a secondary source [uncertain]. Also watch for debt.

4A.2 Patterning (passive movement by a team)

  • Purpose (developers' claim): to impose a missing developmental movement pattern on the nervous system, such as homolateral crawling [source: Novella 1996; Wikipedia, Psychomotor patterning].
  • What it involves (descriptive): several adults move the child's head and limbs together in a rhythmic, crawling-like pattern while the child lies on a table. It is repeated throughout the day as part of the home programme, so families recruit rotas of volunteers [source: Wikipedia, Psychomotor patterning; 6abc 2007; Vail 1967].
  • Steps for you:
    1. Ask how the child responds: do they protest, cry, fall asleep or calm? [synthesis]
    2. Ask whether the child's physiotherapist has been told, in case of hip, spine or muscle-tone concerns. The physical risks of passive handling for a given child are for the child's own physiotherapist and doctor to judge [synthesis].
    3. Ask how the volunteers are recruited and supervised, and whether they are vetted to your local safeguarding standard [synthesis].
    4. Do not observe or join the sessions in a therapeutic role.
  • Example language (illustrative): “What is it like for him during the sessions? And how is it for you, organising everyone who comes to help?”
  • Watch for:
    • signs that the child's distress is being overridden;
    • volunteers who are unvetted, or who are alone with the child;
    • parental exhaustion;
    • siblings drafted in;
    • the loss of play, rest and school time [synthesis, building on the burdens in Vail 1967 and Novella 1997].

4A.3 Crawling and creeping (floor programme)

  • Purpose (developers' claim): to move the child through the claimed developmental stages in sequence [source: Novella 1996; Doman et al. 1960 as summarised].
  • What it involves (descriptive): long periods on the floor, and the use of an inclined floor. Doman's book includes an appendix titled The Inclined Floor Instructions [source: Square One table of contents].
  • Steps for you [synthesis]:
    1. Map the child's day: floor time, rest, play, school, therapy appointments and social contact.
    2. Ask whether other activities have been dropped.
  • Example language (illustrative): “If we drew out a typical Tuesday for her, from waking up to bedtime, what would it look like?”
  • Watch for: the programme displacing school, physiotherapy or OT, play and family outings. The sources describe the programme as consuming family time and resources [source: Vail 1967; Novella 1997]. Which other activities are specifically restricted is [uncertain: not verified].

4A.4 Sensory (“receptive”) stimulation and expressive activities

  • Purpose (developers' claim): to strengthen the visual, auditory and tactile pathways and the child's expressive output [source: Doman et al. 1960 as summarised; Square One description].
  • What it involves (descriptive): structured visual, auditory and tactile input. Sources mention light flashing, loud sounds and identifying objects by touch [source: Wikipedia, IAHP].
  • Steps for you [synthesis]:
    1. Ask how the child tolerates the input.
    2. If the child has epilepsy, prompt the parents to ask the neurologist about flashing lights and other triggers.
    3. Ask about the child's sleep.
  • Example language (illustrative): “Does she have any triggers for her seizures that her neurologist has talked about? It might be worth checking the light activities with them.”
  • Watch for: startle and distress responses; disturbed sleep; any increase in seizures [synthesis].

4A.5 Masking (rebreathing) — harm flag

  • Purpose (developers' claim): to raise inhaled carbon dioxide so that blood flow to the brain increases [source: Wikipedia, IAHP, citing the 1960 paper; Novella 1997].
  • What it involves (descriptive): the child rebreathes into a mask. Hornby and colleagues (2013) are cited as describing a related practice in which children breathe into a plastic bag “until gasping” [source: Wikipedia, IAHP, citing Hornby, Howard and Atkinson 2013] [uncertain: secondary, unverified].
  • Evidence status: Novella states that raising carbon dioxide has no shown benefit for the developing brain [source: Novella 1997].
  • Steps for you [synthesis]:
    1. If parents describe rebreathing or bag-breathing, treat it as a medical-safety question.
    2. Encourage them to raise it with the child's paediatrician promptly.
    3. Where the child appears to be at risk of harm, follow your local safeguarding procedures.
  • Example language (illustrative): “That breathing part is something I'd really want your paediatrician to know about. Would you be willing to tell them at the next appointment, or sooner?”
  • Watch for: the child gasping, panicking, changing colour or resisting. Watch also for parents' fear of being judged, which can lead them to conceal the practice [synthesis].

4A.6 Brachiation, gravity and antigravity activities

  • Purpose (developers' claim): to develop mobility, and the vestibular and upper-body function the theory links to development [source: Doman et al. 1960 as summarised in Wikipedia, IAHP].
  • What it involves (descriptive): hanging and swinging from overhead supports (brachiation), and activities that move the child through space. No details were verified in the sources [uncertain].
  • Steps for you [synthesis]: ask whether the child's physiotherapist knows about these activities, especially if the child has hypotonia, joint laxity (as in Down syndrome), osteopenia or hip problems.
  • Example language (illustrative): “Has his physio had a chance to look at the climbing and swinging parts, given what they've said about his hips?”
  • Watch for: falls, pain and fear in the child [synthesis].

4A.7 Restriction and facilitation for “hemispheric dominance”; eye exercises

  • Purpose (developers' claim): to establish one-sided dominance and to correct eye problems [source: Novella 1996; Wikipedia, IAHP].
  • What it involves (descriptive): activities that restrict or encourage the use of one side; eye-convergence exercises; light flashing for amblyopia [source: Wikipedia, IAHP; the details are uncertain].
  • Steps for you [synthesis]: if the child has a squint or amblyopia, suggest that the parents keep the child's ophthalmology or orthoptic care going alongside.
  • Example language (illustrative): “Is the eye clinic still seeing her? It would be good to keep them in the loop.”
  • Watch for: missed eye-clinic follow-up [synthesis].

4A.8 Diet and fluid restriction — harm flag

  • Purpose (developers' claim): reduced fluids, and a diet low in salt, sweets and “thirst provoking” foods, were part of the 1960 programme [source: Wikipedia, IAHP, citing the 1960 paper]. In 2007 IAHP described a strict diet of all-natural, unprocessed food [source: 6abc 2007].
  • What it involves (descriptive): restricting the child's fluids and food types. No amounts are given here.
  • Steps for you [synthesis]:
    1. Ask whether the child's paediatrician or dietitian has approved the regime. This matters especially for a child with feeding or swallowing difficulty, constipation or kidney concerns.
    2. Suggest a dietetic review.
  • Example language (illustrative): “Changes to what he drinks can matter a lot for some children. Could we ask your dietitian or GP to check this with you?”
  • Watch for: signs of dehydration, weight loss, constipation or distress at meals. Hold an eating-disorder lens for the parent or a sibling if food rules spread across the family [synthesis].

4A.9 Reducing anticonvulsant medication — major harm flag

  • Purpose (developers' claim): a 2007 report stated that IAHP aims to wean children off as many medications as possible, including anti-seizure drugs [source: 6abc 2007]. Doman's book has an appendix titled Detoxification from Anticonvulsants [source: Square One table of contents].
  • What it involves (descriptive): a reduction of seizure medication encouraged by the programme. In the same report, local doctors said that anti-seizure medication was the best treatment for the featured child's condition [source: 6abc 2007].
  • Steps for you [synthesis]:
    1. Never advise on medication.
    2. If you learn that seizure medication is being reduced or stopped without the prescribing neurologist, urge the parents to contact the neurologist at once.
    3. Record what you were told and the advice you gave.
    4. Where the child appears to be at risk of significant harm, follow your local safeguarding procedures.
  • Example language (illustrative): “I can't advise on medicines, but stopping seizure medication without the neurologist can be dangerous. Can we call them together today?”
  • Watch for: more seizures, or longer ones; emergency visits; the parents avoiding the neurologist [synthesis].

4A.10 Early-learning programmes for children without disabilities

  • Purpose (developers' claim): to multiply the intelligence of well babies and children [source: GuideStar; Square One].
  • What it involves (descriptive): flashcard reading, “baby math”, encyclopedic “knowledge”, foreign language and music, starting in infancy. The Better Baby Institute used flashcards from about three months of age. Child-development experts at the time considered many aspects useless or possibly harmful [source: Wikipedia, IAHP].
  • Steps for you [synthesis]: explore the parents' expectations and anxiety about “missing the window”. Discuss the role of responsive play.
  • Example language (illustrative): “What would it mean to you if she learned to read later than the cards promise?”
  • Watch for: perfectionism, a sense of the child's worth depending on performance, and an infant overwhelmed by input [synthesis].

4B. The psychotherapist's interventions with families

4B.1 Understanding the family's path to the programme

  • Purpose: to understand what led the family here. This often includes a bleak prognosis, feeling dismissed by services, or a fear of time running out. Understanding this lets you respond to the need underneath the choice [synthesis].
  • Steps:
    1. Ask for the story of the diagnosis.
    2. Ask what the family has tried, and what services offered or failed to offer.
    3. Ask how they found IAHP or a similar programme.
    4. Ask what success would look like to them.
    5. Reflect their hope and their grief without judging either.
  • Example language (illustrative): “It sounds as though, when you were told what to expect, nobody gave you anything to do. This programme gives you a lot to do.”
  • Watch for: a sense that the only alternative is “giving up”. Watch also for anger at mainstream services. In 2007 IAHP's director described critics as people “usually sitting in an Ivory Tower” [source: 6abc 2007]. If you do not hear that framing, the family may never feel safe enough to raise doubts.

4B.2 Supporting an informed decision

  • Purpose: to make sure the parents know the professional positions and the demands before they commit, or before they continue [source: AAP 1999 as quoted; ASAT, which advises professionals to present patterning as untested and to encourage careful evaluation].
  • Steps:
    1. Ask permission to share what professional bodies say.
    2. State the AAP position and its history accurately (see Harm account).
    3. Separate IAHP's claims from independent evidence.
    4. List the practical demands: time, volunteers, cost and travel.
    5. Suggest questions to ask IAHP:
      • What independent, controlled studies support the programme?
      • What happens if the child does not progress?
      • Will you work with the child's doctors?
      • What does the programme say about medication and diet?
    6. Suggest questions to ask the child's paediatric team:
      • What evidence-based therapies are available, and how quickly?
      • Which of the programme's elements would be unsafe for this child?
    7. Leave the decision with the parents [synthesis].
  • Example language (illustrative): “I want you to have the full picture, because you're the ones who'll be living it. Can I tell you what the paediatricians' professional body has said, and then hear what you make of it?”
  • Watch for: your own urge to rescue or persuade; parents who agree in session and then withdraw. Measure success by whether they can describe the evidence and the costs in their own words, not by what they decide [synthesis].

4B.3 Coordinating with the child's paediatric team

  • Purpose: to keep the child's medical, physiotherapy, OT, speech and language therapy, and educational care going, and safe [synthesis; Novak et al. 2017 on prompt referral to diagnosis-specific early intervention].
  • Steps:
    1. Obtain the parents' written consent to share information.
    2. Agree with the parents what will be shared.
    3. Contact the paediatrician or lead clinician. Your focus is family wellbeing and any safety concerns about medication, breathing practices or diet.
    4. Encourage the parents to bring the programme plan to the child's appointments.
    5. Diarise follow-up.
  • Example language (illustrative): “Would it help if I wrote to Dr X to say how much the family is carrying at the moment, so the team can plan around that?”
  • Watch for: the family dropping appointments; the team not knowing that the child is in the programme; a breakdown of trust between the family and the team [synthesis].

4B.4 Safeguarding, the child's assent and distress

  • Purpose: to keep the child's welfare paramount within a programme that is intensive, hands-on and run by volunteers [synthesis].
  • Steps:
    1. Ask how the child shows “yes” and “no”, and how the family responds to the child's protest.
    2. Ask about rest, play and school.
    3. Ask who handles the child, and whether volunteers are vetted.
    4. Note any withdrawal of medication, any restricted fluids, and any breathing practices that cause gasping.
    5. Consult your supervisor or safeguarding lead, and act under local procedures, where the child appears to be at risk of significant harm.
    6. Tell the parents what you are doing unless that would increase the risk.
  • Example language (illustrative): “When she cries during a session, what happens next? I ask every family this, because children's signals matter so much when they can't use words.”
  • Watch for:
    • injuries;
    • more seizures;
    • weight loss;
    • a fearful child;
    • parents who are unable to stop despite the child's distress;
    • the isolation of the household [synthesis].

4B.5 Assessing family load, siblings and the couple

  • Purpose: the AAP warned that the demands can deplete finances and strain parent and sibling relationships [source: AAP 1999 as summarised by neurodiversity.net and Wikipedia]. This intervention addresses those burdens.
  • Steps:
    1. Map each family member's hours, sleep, money, work, debt and social contact.
    2. Meet the siblings, or ask about them.
    3. Check for depression and anxiety in each parent.
    4. Offer couple sessions.
    5. Identify respite and carers' support.
  • Example language (illustrative): “When did the two of you last have an evening that wasn't about the programme? And how is Sam finding it?”
  • Watch for:
    • emotional and physical exhaustion. Novella reports one mother describing the programme as dominating her life [source: Novella 1997];
    • siblings who are neglected or parentified;
    • couple conflict;
    • financial crisis [synthesis].

4B.6 Working with hope, grief and guilt

  • Purpose: to address a specific risk. Results are said to “vary” and depend on dedicated parents, so parents may blame themselves when the child does not progress [source: Novella 1996 and 1997; Vail 1967]. This intervention works with that self-blame and with grief for the expected child.
  • Steps:
    1. Name the double bind: if the child improves, the programme gets the credit; if not, the parents feel at fault.
    2. Externalise the blame onto the programme's design, not onto the parents.
    3. Work with grief for the expected child, and acceptance of the actual one.
    4. Hold hope in a realistic form, for example the child's comfort, participation and relationships [synthesis].
  • Example language (illustrative): “You did everything they asked. The fact that it didn't deliver what was promised isn't a measure of your love or your effort.”
  • Watch for: depression; suicidal thoughts in exhausted carers (assess using current standard practice); intensifying the programme as a defence against grief [synthesis].

4B.7 Supporting a family that is leaving the programme

  • Purpose: to help the family stop without collapse or shame, and to help them re-engage with services [synthesis].
  • Steps:
    1. Explore the reasons for stopping and any fears about stopping.
    2. Plan the transition with the paediatric team: physiotherapy and OT, speech and language therapy, and school.
    3. Help the family rebuild routines that include play and rest.
    4. Address money and volunteer relationships. Volunteers may be friends or church members, and the family may feel guilty towards them.
    5. Process the loss of hope and of identity as a “programme family”.
  • Example language (illustrative): “Stopping can feel like a second diagnosis. What would you want the next few months to feel like for all of you?”
  • Watch for: abrupt changes to medication or diet made without medical input; relapse into another similar programme; isolation; conflict with the volunteers [synthesis].

4B.8 Integrating with the child's evidence-based care

  • Purpose: to support the family's engagement with diagnosis-specific early intervention, as Novak and colleagues recommend for cerebral palsy. Their review describes an approach that optimises motor and cognitive development, prevents secondary complications and supports caregiver wellbeing [source: Novak et al. 2017].
  • Steps:
    1. Ask what the child's therapy goals are.
    2. Help the parents voice their own goals to the team.
    3. Support the parents' own wellbeing as part of the child's care.
  • Example language (illustrative): “What's one thing you'd love him to be able to do at home that his physio could help with?”
  • Watch for: goals that are concrete and meaningful to the family, and parents who feel they are partners in the child's care. These are signs that the work is helping [synthesis].

5. Handling problems

All of this section is [synthesis], except where a source is given.

  • Parents feel judged when you raise the evidence.
    • Lead with their goals and their love for the child.
    • Ask permission before giving information.
    • Attribute the evidence to the professional bodies, not to yourself.
    • Say clearly that the decision is theirs.
    • Repair openly if you have pushed: “I think I came on too strong last week. I'm on your side, and I want to understand.”
  • The family is fully committed and wants you only for stress management.
    • Agree to that focus.
    • Keep the safety questions about medication, breathing practices, fluids and the child's distress on the agenda as standing items.
    • Coordinate with the paediatric team, with consent.
  • The parents ask you to join or recruit for the patterning team, or to observe and give feedback.
    • Decline, and explain the boundary: it would create a dual relationship and is outside your competence.
    • Offer the support you can give instead.
  • The parents conceal parts of the programme.
    • Normalise the fear of being judged.
    • Explain the limits of confidentiality where the child's safety is concerned.
    • Ask directly about medication and breathing practices.
  • Seizure medication has been reduced without the neurologist.
    • Urgent: see 4A.9. Contact the neurologist that day, follow safeguarding procedures where indicated, and record everything.
  • The child shows persistent distress during the programme.
    • Explore what the parents notice, and validate their conflict between hope and the child's signals.
    • Involve the paediatrician.
    • Follow safeguarding procedures if the distress is being consistently overridden.
  • The parents are burning out.
    • Screen for depression in each parent and assess risk.
    • Look for practical respite.
    • Explore whether the programme can be scaled down safely, with the family's own clinicians (a decision for the family, not you).
    • Arrange couple work.
  • The parents split over continuing.
    • Hold couple sessions.
    • Help each parent hear the other's fear: one may fear “giving up” and the other may fear losing the family.
  • A sibling is struggling.
    • Arrange individual time for the sibling.
    • Refer to a young carers service where available.
    • Plan with the parents for protected sibling time.
  • The family has left the programme but is drawn to a rebranded one (see Harm account).
    • Use the same informed-decision work (4B.2).
    • Compare the claims with the professional positions.
  • The family experiences regression or a health setback and blames themselves, or blames you for encouraging them to stop.
    • Do not defend yourself.
    • Validate their pain.
    • Refocus on the clinical team's assessment of the cause.
    • Seek supervision.
  • Your own countertransference. Watch for anger at the programme turning into contempt for the parents, and for despair about the child's prognosis. Take both to supervision.

Harm account

What was actually done

Origins and promotion.

  • 1940s: Temple Fay, a neurosurgeon at Temple University, Philadelphia, developed pattern movements for neuromuscular disorders. His ideas drew on recapitulation theory [source: Wikipedia, IAHP].
  • 1955: Glenn Doman and Carl Delacato founded IAHP in Philadelphia [source: Square One; Wikipedia, IAHP].
  • 1960: Doman and colleagues published “Children with severe brain injuries” in JAMA, describing their preliminary results as “encouraging” [source: Vail 1967 memo]. Its methodology was later criticised [source: Wikipedia, IAHP].
  • 1960s: newspapers and magazines reported successes widely. That coverage prompted professional bodies to issue statements [source: Vail 1967].
  • 1996: the US television programme Miracle Babies (NBC) presented patterning uncritically as a “miracle cure” [source: Novella 1997].
  • 2007: IAHP staff said they had seen more than 20,000 “hurt” children [source: 6abc 2007; IAHP's own figure].

What families went through. The account below is pieced together from the sources named.

  1. Entry. Both parents attended a multi-day course at IAHP and paid fees. In 2007 these were at least US$1,600 per couple for the course and US$3,000 for the child's initial evaluation. Families often travelled long distances. In the 2007 report, a family from abroad raised the money through public charity appeals [source: 6abc 2007].
  2. Evaluation. The child was placed on IAHP's developmental profile, and a home programme was prescribed [source: Square One; Wikipedia, IAHP].
  3. Daily home programme. Teams of adults moved the child's head and limbs through crawling patterns repeatedly through the day. Families recruited rotas of volunteers to staff the teams [source: Wikipedia, Psychomotor patterning; Vail 1967]. Around the passive movement were:
    • floor crawling and creeping, including an inclined floor;
    • sensory stimulation, including light flashing and loud sounds;
    • rebreathing with a mask to raise inhaled carbon dioxide, and a reported practice of breathing into a plastic bag until gasping;
    • brachiation;
    • restriction of fluids and of certain foods [source: Wikipedia, IAHP, citing the 1960 paper and Hornby et al. 2013; Square One table of contents].
  4. Medication. In 2007 IAHP was reported to aim to wean children off as many medications as possible, including anti-seizure drugs [source: 6abc 2007]. Doman's book has an appendix on “detoxification” from anticonvulsants [source: Square One].
  5. Progress and non-response. Progress was judged on IAHP's own profile. Because results were said to vary and to depend on parental dedication, lack of progress could fall back on the parents [source: Novella 1996 and 1997; Vail 1967]. When a child regressed, the family returned for further evaluation and a revised programme [source: 6abc 2007].
  6. Outside scrutiny. IAHP reportedly told parents not to take part in independent evaluations. It also withdrew from a planned federally and privately supported study during the final planning stages [source: Wikipedia, IAHP] [uncertain: secondary, unverified].

The professional record, in date order. The 1967 and 1999 items and the 2006 reaffirmation rest on published records; the others are as secondary sources report them.

  • 1965: statements from the American Academy for Cerebral Palsy (executive committee) and from the Canadian Association for Retarded Children [source: Wikipedia, IAHP; uncertain].
  • 1967: a joint statement by the Executive Boards of the AAP and the American Academy of Neurology, published in Neurology, volume 17, July 1967, page 637. It found “as yet no firm evidence substantiating the claims” and no controlled studies showing superiority over conventional treatment. It also listed the sacrifices required of families: time, energy, volunteer help, cost and transport [source: Vail 1967 memo enclosing the statement]. Wikipedia separately gives 1967 for the American Academy of Neurology statement and 1968 for the AAP's first warning [uncertain: the 1967 and 1968 dates may refer to the same or to separate statements].
  • 1968: a statement from the American Academy of Physical Medicine and Rehabilitation [source: Wikipedia, IAHP; uncertain].
  • 1982: the AAP Committee on Children With Disabilities repeated the warning, in Pediatrics 70(5):810 [source: Wikipedia, IAHP] [uncertain: secondary, unverified].
  • 1999: AAP policy statement The Treatment of Neurologically Impaired Children Using Patterning, by the Committee on Children With Disabilities (Ziring and colleagues), Pediatrics 104(5):1149–1151, doi 10.1542/peds.104.5.1149 [source: Einstein research portal record; Wikipedia]. It found the theory “outmoded and oversimplified”, said claims “remain unproved”, and warned about the demands on families, the depletion of their finances, and strain on parental and sibling relationships [source: quotations and summary via ASAT, neurodiversity.net and Wikipedia]. One co-author, the developmental paediatrician Ted Kastner, told a 2007 news report that patterning has “no value” for motor or cognitive skills [source: 6abc 2007].
  • Reaffirmation: the AAP's list of reaffirmed and retired publications records the 1999 statement as reaffirmed in January 2006 [source: Pediatrics (Ed esp) 2006;61(5):347]. Wikipedia cites a further reaffirmation in 2010 (Pediatrics, doi 10.1542/peds.2010-2212) [uncertain: secondary, unverified]. A 2007 news report described the AAP's position as standing for about 40 years [source: 6abc 2007].
  • Other bodies:
    • The National Down Syndrome Congress criticised IAHP's poorly documented cure claims and its demands on parents [source: neurodiversity.net; date uncertain].
    • For autism, the Association for Science in Autism Treatment (ASAT) says no scientific studies exist and advises professionals to present patterning as untested [source: ASAT].

How it caused harm

  • No benefit for the promised outcomes.
    • Dozens of controlled trials from the late 1960s to the early 1970s showed no intellectual improvement. Some showed modest motor or visuo-spatial gains, and these were not reproducible [source: Novella 1996 and 1997, citing Cohen et al. 1970, Neman et al. 1975, Ziegler and Victoria 1975].
    • Later reviews are reported to have found that untreated students did better than treated ones in higher-quality studies (Kavale and Mostert 2004). Claims of superior results were not substantiated (von Tetzchner et al. 2013). The programme was judged ineffective and potentially damaging to families (Hornby et al. 2013) [source: Wikipedia, IAHP] [uncertain: secondary, unverified].
    • Gains seen in children may reflect maturation, individual attention or physiotherapy [source: 1967 statement via Vail memo].
  • Burden on the family. The programme takes huge amounts of time, energy, volunteer labour, money and travel [source: 1967 statement]. The AAP described depleted finances and strain on parents' and siblings' relationships [source: AAP 1999 as summarised]. Novella describes emotional and physical exhaustion, and resources diverted from siblings and other family needs [source: Novella 1997].
  • False hope, guilt and denial. Results are said to “vary” and to depend on dedicated parents. Parents whose child does not improve may blame themselves, and the claims can encourage denial of the child's condition [source: Novella 1997]. The 1967 statement had already warned that failure may implicate the parents [source: Vail 1967]. Novella calls targeting desperate parents with unsupported claims cruel, and says it can cause financial and emotional damage [source: Novella 1997; Wikipedia, IAHP].
  • Medical risk to the child.
    • Reducing anti-seizure medication: in the case reported in 2007, local doctors said medication was the best treatment for the featured child [source: 6abc 2007].
    • Rebreathing and bag-breathing to the point of gasping: this has no shown benefit [source: Novella 1997; Hornby et al. via Wikipedia].
    • Fluid and dietary restriction [source: 1960 programme as summarised].
    • Specific documented injuries or deaths linked to these elements are [uncertain: not verified]. The mechanisms of risk (seizure recurrence, respiratory distress, dehydration) are inferred from the practices [synthesis].
  • Delay or displacement of effective care. Cerebral palsy can now be diagnosed before 6 months' corrected age, and prompt diagnosis-specific early intervention is recommended [source: Novak et al. 2017]. A programme that fills the family's day, or that leads it away from clinicians, risks displacing this care [synthesis].
  • The child's experience. Hours of passive handling by many adults can occur without the child's assent, and with less time for rest, play and school [synthesis; first-hand accounts by children: uncertain, not verified].
  • Most at risk:
    • children with severe disabilities who cannot refuse;
    • children with epilepsy;
    • children with feeding or breathing difficulties;
    • families given bleak prognoses or with little support;
    • families who travel from abroad or fundraise publicly;
    • siblings [synthesis, informed by the sources above].

Recognising it today

Current names and providers (as sources report them).

  • IAHP courses: What To Do About Your Brain-Injured Child, The Intensive Treatment Program, How To Multiply, The Newborn Course and the Aspirant Program [source: GuideStar]. Wikipedia reports IAHP offices and programmes in several other countries.
  • IAHP-related brands: the Better Baby Institute, now part of IAHP, and the Gentle Revolution book series [source: Square One; Wikipedia, IAHP].
  • NACD (National Academy of Child Development, Utah, run by Robert Doman): it offered patterning, and also food-sensitivity evaluation and “orthomolecular physician” consultation [source: Novella 1996 and 1997].
  • The Family Hope Center: named in a 2013 study of IAHP-based interventions [source: Wikipedia, IAHP; uncertain].
  • The Northwest Neurodevelopmental Training Center: described as offering neurological evaluations and home programmes derived from Doman-Delacato methods [source: neurodiversity.net; current status uncertain].

Phrases and rationales.

  • “Neurological organisation”, a “neurodevelopmental” home programme or “child brain development”, used as a whole-family regime.
  • “Hurt” or “brain-injured” used to cover autism, Down syndrome, ADHD, epilepsy and cerebral palsy alike [source: 6abc 2007].
  • Missed crawling and creeping stages presented as the cause of later problems.
  • Oxygenating the brain with masking.
  • Professionals dismissed as an “Ivory Tower” [source: 6abc 2007].
  • Outcome statistics that are self-reported [source: GuideStar].

Red flags in a programme or a colleague's practice [synthesis, drawn from the features above].

  • Parents must take a course before the child is seen.
  • A daily regime runs by volunteer teams.
  • Rebreathing or bag-breathing.
  • Fluid restriction.
  • Encouragement to reduce anticonvulsants or other prescribed medication outside the prescriber.
  • Discouragement of independent evaluation, or of contact with the child's doctors.
  • Claims of cure or of normalisation across many unrelated diagnoses.
  • Responsibility for outcomes placed on the parents' dedication.
  • High fees and repeated re-evaluations.

How legitimate care differs.

  • Evidence-based early intervention follows a standardised diagnosis made by the child's clinicians [source: Novak et al. 2017].
  • It is delivered by regulated therapists.
  • It is goal-directed and involves the child actively, not passively.
  • It aims to prevent secondary complications and to support caregiver wellbeing, not to exhaust caregivers [source: Novak et al. 2017].
  • It works alongside medical care, not in place of it [synthesis].
  • Note that the word “neurodevelopmental” also appears in mainstream terms, such as neurodevelopmental therapy (Bobath, covered in another entry). Judge a programme by its features, not by its name.
  • Some primitive-reflex and sensory-motor programmes share features with this one. Treat any lineage as [uncertain] unless a source states it.

What to do instead and how to help those harmed

  • Instead:
    • early, accurate diagnosis (for cerebral palsy: term-age MRI, the Prechtl General Movements Assessment and the Hammersmith Infant Neurological Examination);
    • prompt referral to diagnosis-specific early intervention [source: Novak et al. 2017];
    • physiotherapy, occupational therapy and speech and language therapy from regulated professionals, coordinated by the child's paediatrician;
    • educational support;
    • carers' assessment and respite [synthesis];
    • for autism, interventions with independent research support, discussed with the child's team. Present patterning as untested [source: ASAT].
  • Helping families now: use 4B.1 to 4B.8.
    • Assess each parent for depression, anxiety, exhaustion, guilt, debt and relationship strain.
    • Assess the siblings' wellbeing.
    • Support the family in rebuilding trust with services [synthesis].
  • Adults who went through patterning as children [synthesis]. Explore:
    • their memories of being handled, restricted or masked;
    • feelings about their parents' sacrifice and their own “failure”;
    • body-related distress, and touch sensitivity (do not use touch in psychotherapy; adapt pacing);
    • grief for a lost childhood;
    • family loyalty conflicts.
  • Ethical, reporting and legal duties.
    • Work within your competence and refer when appropriate [source: APA Code 2.01 and 3.09; UKCP items 23–24; HCPC 1.1 and 4.4].
    • Obtain valid consent before sharing information [source: HCPC 2.7].
    • Take no referral fees [source: EABP 5.d].
    • Never advise starting or stopping medication.
    • Where a child appears to be at risk of significant harm, for example through unsupervised withdrawal of anticonvulsants, practices that cause respiratory distress, dehydration, or persistent overriding of distress, follow your jurisdiction's child-protection procedures, including mandated reporting where it applies. Document what you were told and what you did [synthesis].
    • Do not endorse the programme or take part in it.

Sources

Web sources

Books and articles cited (details as given in the sources above)

  • American Academy of Pediatrics, Committee on Children With Disabilities (Ziring, P. R., Brazdziunas, D., Cooley, W. C., Kastner, T. A., Kummer, M. E., González de Pijem, L., Quint, R. D., Ruppert, E. S., Sandler, A. D.) (1999). The treatment of neurologically impaired children using patterning. Pediatrics, 104(5), 1149–1151. doi:10.1542/peds.104.5.1149.
  • Executive Boards of the American Academy of Pediatrics and American Academy of Neurology (1967). Joint statement on the Doman-Delacato treatment. Neurology, 17, 637 (as enclosed in Vail 1967).
  • American Academy of Pediatrics, Committee on Children With Disabilities (1982). Pediatrics, 70(5), 810 [uncertain: as cited by Wikipedia].
  • American Academy of Pediatrics (2006). Publicaciones de la AAP retiradas y reafirmadas [AAP publications retired and reaffirmed]. Pediatrics (Ed esp), 61(5), 347 (lists the 1999 patterning statement as reaffirmed, January 2006). American Academy of Pediatrics (2010). AAP publications reaffirmed and retired. Pediatrics, doi:10.1542/peds.2010-2212 [uncertain: as cited by Wikipedia].
  • Doman, R. J., et al. (1960). Children with severe brain injuries. JAMA. doi:10.1001/jama.1960.03030030037007 [uncertain: full author list not verified; cited as “R. J. Doman et al.” in Vail 1967 and Wikipedia].
  • Doman, G. (2005; first edition 1974). What To Do About Your Brain-Injured Child. Square One Publishers.
  • Hornby, G., Howard, J., Atkinson, M. (2013). Controversial Issues in Special Education. Routledge [uncertain: as cited by Wikipedia].
  • Kavale, K. A., Mostert, M. P. (2004). The Positive Side of Special Education. Rowman & Littlefield [uncertain: as cited by Wikipedia].
  • von Tetzchner, S., et al. (2013). Developmental Neurorehabilitation. doi:10.3109/17518423.2012.739211 [uncertain: not verified].
  • Hines, T. M. (2001). The Doman-Delacato patterning treatment for brain damage. Scientific Review of Alternative Medicine [uncertain: as cited by Wikipedia].
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