Bernard Fleming - ‘Autism Interventions: Which Ones Can You Trust?

Autism Interventions: Which Ones Can You Trust?

Bernard Fleming, Information Manager, Research Autism

VC Updated by BF on 27 May at 11.00

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Autism Interventions:Which Ones Can You Trust?

Why is it difficult to know which ones to trust?

•Interventions are confusing

•The evidence is confusing

•People don’t always have the necessary tools to interpret the

evidence

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Autism Interventions:Which Ones Can You Trust?

• Understanding the interventions

•Confusions and limitations

• Understanding the evidence

• Sources, strengths and limitations

• Tools to interpret the evidence

• Principles, questions, red flags

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Interventions: The Confusions

Interventions are confusing for a variety of reasons.

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Definition of Interventions

The word interventions is not widely understood by non-

professionals

Does it mean treatment, therapy, service or something else?

We use it to mean any action which is designed to help people on

the autism spectrum

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Definition of Interventions

According to our definition interventions include

•Treatment and therapies, such as cognitive behavioural therapy

•Medications and dietary supplements, such as risperidone and

omega-3 fatty acids

• The provision of services, such as supported employment

• Creating autism friendly environments, such as buildings with

quiet rooms

• Listening to what the person on the spectrum

in front of you is saying

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Range of Interventions

•There are dozens of different types of intervention

•Medical, biomedical, behavioural, developmental,

motor/sensory, alternative and augmentative

communication, assistive and adaptive technology, CAM

• There are hundreds of different interventions

•ABA, chelation, dietary supplements, hippotherapy, miracle mineral solution,

the Son-Rise program, transcranial magnetic stimulation

•There are numerous different names for the same thing

• vitamin B-9, folinic acid, 5-formyl tetrahydrofolate

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Purpose of Interventions

Different interventions are designed to do different things

• Cure or prevent autism

• Target the core difficulties in autism (social communication)

• Increase adaptive behaviours (daily living skills)

• Reduce challenging behaviour (self injurious behaviour)

• Treat co-existing conditions (epilepsy)

• Reduce stress and increase skills and

confidence in parents

•Teach parent, carers and others to be more

accepting of autism

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Interventions: The Limitations

•People on the autism spectrum are unique individuals (what works for one

person may not work for another)

•Some interventions do not appear to work at all (secretin)

•Some interventions that do work only help with certain issues(CBT)

•Some interventions may not produce any real or

significant practical benefits outside of the lab (oxytocin)

•Some interventions are very expensive and time

consuming (some forms of EIBI)

•Some interventions are potentially hazardous

(vitamin A)

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Scientifically Unfeasible and Potentially Hazardous

Some interventions are ineffective AND potentially

hazardous

•Chelation (chemicals)

•Holding Therapy (restraint)

•Miracle Mineral Solution (chemicals)

•Packing Therapy (restraint)

•Testosterone Regulation (chemicals)

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The Evidence: Unreliable Sources

The first stage to understanding the evidence is knowing where to look

There are some sources which MAY not be as reliable or trustworthy as

others

• Some websites

• Some social media channels

• Some mass media channels

• Some celebrities

•Some professionals

• Some friends and family

Potentially Reliable Sources

There are some sources which are more reliable because they

draw on research/best practice guidance.

However, before we look at these it may be helpful to understand

some of the strengths and limitations of the evidence base.

Just because someone says something in a

research paper that doesn’t mean it’s scientifically

valid

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Research:The Strengths

Good quality research has a number of strengths.

• It is objective and impartial

• It is based on observable evidence

• The peer-review process provides a way of checking and criticising the research before it is

published

• The protocols, measures and results are properly

documented so that independent researchers can

reproduce them

•The conclusions may change when new evidence

comes along

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(Autism) Research:The Limitations

• Relatively little research on autism compared to some other issues (schizophrenia)

•Quality of the research varies enormously – there is relatively little high quality

research (RCTs)

•Relatively little research on non-medical or non

-behavioural interventions

•Some of the research is written by researchers

with vested interests (or not published at all)

•Relatively little research which involves

people on the spectrum as active participants

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Scientific Jargon

Some research papers are written in jargon

“This paper deals with autistic syntax and its expressions both in the fully

fledged autistic structure and in the autistic zones of another personality

structures. The musical notion of the organ point serves as a point of

departure in an attempt to

describe how autistic syntax transforms what was

meant to constitute the substrate for linguistic

polyphony into a one-dimensional, repetitive

score of emotional volume”

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Evidence Base: Specific Sources

There are various sources of research-based evidence on autism

•Research databases and journals: PubMed, Autism

•Research collaborations: Cochrane collaboration, Campbell collaboration.

• Government bodies (semi-statutory guidance): NICE, SCIE

•Professional associations: Behaviour Analyst

Certification Board , College of Occupational Therapy

• Autism organisations: Research Autism, Autism

Education Trust

•Other: practitioner websites

National Institute for Health Care Excellence (NICE)

UK agency which provides national guidance and advice to

improve health and social care.

Provides summary of research in key areas and recommendations

on best practice

•Identification and assessment of people on the autism spectrum

•General principles of care and organisation of care

•Guidance on interventions inc. core symptoms,

challenging behaviours, mental disorders, residential

care, support for families

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NICE Quality Standard 51

• People with possible autism who are referred to an autism team for a diagnostic

assessment have the diagnostic assessment started within 3 months of their

referral.

• People having a diagnostic assessment for autism are also assessed for

coexisting physical health conditions and mental health problems

•People with autism have a personalised plan that is

developed and implemented in a partnership

between them and their family and carers (if

appropriate) and the autism team

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NICE Quality Standard 51

• People with autism are offered a named key worker

to coordinate the care and support detailed in their

plan.

•People with autism have a documented discussion with a member of the autism

team about opportunities to take part in age-appropriate psychosocial interventions

to help

address the core features of autism

•People with autism are not prescribed medication

to address the core features of autism.

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NICE Quality Standard 51

• People with autism who develop behaviour that challenges are

assessed for possible triggers, including physical health conditions,

mental health problems and environmental factors

•People with autism and behaviours that challenges are not offered

antipsychotic medication for the behaviour unless it is being

considered because psychosocial or other

Interventions are insufficient or cannot be delivered

because of the severity of the behaviour.

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NICE Guidance

•Potential Strengths

•Credible and authoritative because it’s NICE

•Comprehensive and thorough

•Scientifically robust

•Available in full in print, online and via app

•Potential Limitations

• Evidence threshold is very high (RCTs)

•Bulky and complicated (most people will never read

the detailed guidance)

•(Service providers frequently ignore what it says)

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Research AutismUK charity dedicated to the promotion of high-

quality research into autism interventions

•Website: www.researchautism.net Set up specifically to provide

evidence based information on interventions in one user-friendly

place.

•Book: Choosing autism interventions: a research-based

guide. Written to distil some of the key messages from

the website.

•Tools and resources: Principles, key questions and

red flags

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Research Autism

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Research Autism:Strengths and Limitations

• Potential Strengths

•Currently the only autism organisation accredited to the NHS

Information Standard

•Impartial and objective, scientifically robust, user-friendly

information

•Potential Limitations

•Ranking system is overly-simplistic

•(Does not offer practical advice on which

interventions if any to use or how to implement them)

The Tools

Before you decide which interventions you can trust you

may like to consider some useful tools:

•What the evidence base says (bearing in mind its

limitations)

• Key principles to follow

• Key questions to ask

• Red flags to watch out for

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Key PrinciplesAny intervention or programme should follow most if

not all of these principles

•The intervention is based on a good understanding of autism

(refrigerator mothers)

•The people who deliver the intervention know the person well and

respect their feelings and views (Winterbourne)

•The person’s capacity for consent is taken into

account (Mental Capacity Act,)

•The intervention is adapted to the needs of the

person receiving it (CBT)

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Key Principles

•The intervention is based on a theory that is logical and

scientifically feasible (homeopathy)

•Research evidence shows the intervention can work for people on

the autism spectrum (vitamin A)

•The intervention works in the real world, not just in a research

laboratory (theory of mind training)

•The intervention is delivered by, or supported by,

appropriately qualified and experienced professionals

(diets )

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Key Principles•The people delivering the intervention follow

established guidance (dietary supplements)

•The intervention is carefully monitored and reviewed on a regular basis

(antipsychotics)

•The intervention provides significant benefits (weighted blankets)

•The intervention does not cause significant physical

or emotional harm (holding therapy)

•The benefits outweigh any costs including risks

(intensive interventions)

•The intervention is good value for the money

and time invested (dolphin therapy)

Questions to Ask

There are numerous questions you may wish to ask about a specific intervention or

programme:

• What is the aim of the treatment? How is it supposed to work?

•Does it focus on one specific problem or is it a general approach?

•How much does it cost inc travel, training, equipment?

•How long does it take and how often do you have to do it?

•Are there any side effects or hazards?

•What effect will it have on the rest of the family?

•What independent proof is there that any claims for the intervention are justified?

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Red Flags

Red flags are signs that an intervention or programme is not what

it seems.

The more red flags, the less likely it is to be trustworthy.

•Celebrity endorsement

•Glitzy presentations which include bogus scientific data

•Commercialisation of the intervention or programme

•‘Research’ findings that have not been

published in reputable peer reviewed journals

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Red Flags

•Use of outdated or incomplete research studies and reviews

which don’t show the full picture.

•Hard-sell techniques (including emotional blackmail or special

offers)

•Use of words like ‘miracle’, ‘faith’, ‘trust’, ‘cure’, ‘recovery’

•Claims of high success rates and rapid results

•Claims that the intervention is effective for

many conditions, disorders and diseases

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Red Flags

•Claims that the intervention is easy to use, requiring little training

or expertise

•Claims that other proven interventions are unnecessary, inferior or

harmful

•Warnings and reprimands from appropriate organisations, such as

the National Institute for Health and Care Excellence or the

Advertising Standards Authority

Remember: if an intervention looks too

good to be true then it probably is.

Conclusions

•Deciding which autism interventions to trust can be difficult for a

whole range of reasons

• The evidence base has many strengths but also many limitations

• There are a number of useful tools which can help you interpret

that evidence base

• Those tools include semi-statutory guidance (NICE), key principles

to follow, key questions to ask and red flags to watch out for

If something sounds too good to be true it

probably is.

WebsitesThe following is a list of websites which have useful

information on autism interventions

•Autism Education Trust at www.autismeducationtrust.org.uk

•Cochrane Collaboration at www.cochranelibrary.com

•ERIC at http://eric.ed.gov

•National Autism Centre at www.nationalautismcenter.org

•NPDC at www.autismpdc.fpg.unc.edu

•NICE at www.nice.org.uk

•PubMed at www.ncbi.nlm.nih.gov/pubmed

•Research Autism at www.researchautism.net

•SCIE at www.scie.org.uk

PublicationsThe following is a list of some useful and reliable

publications on autism interventions

•Autism. [NICE quality standard 51] (2014). London: NICE

•Autism: The management and support of children and young people on

the autism spectrum (2013). London: Leicester and London: The British

Psychological Society and The Royal College of Psychiatrists.

•Fleming, Hurley and the Goth (2015). Choosing autism interventions: a

research-based guide. Brighton: Pavilion Publishing and Media.

•Improving access to social care for adults with autism

(2011). London: Social Care Institute for Excellence.

Publications

•Interventions for adolescents and young adults with autism spectrum

disorders. (2012). Agency for Healthcare Research and Quality. Rockville,

MD.

•National Collaborating Centre for Mental Health (2012) The NICE guideline

on recognition, referral, diagnosis and management of adults on the autism

spectrum. Leicester and London: The British Psychological Society and The

Royal College of Psychiatrists.

•Therapies for children with autism spectrum disorders (2012). Agency for

Healthcare Research and Quality. Rockville, MD.

•What is good practice in autism education? (2011).

London: Autism Education Trust.

For more information

Please contact us via

• Website at www.researchautism.net

• Telephone 020 3490 3091

• Email: [email protected]

Thank You