I HINKING .org.uk Taking Action Treatments and therapies for autism Thinking Autism Guide for Parents 2nd Edition Introduction Contents Behavioural and Developmental Autism and Disorder (ASD) are general terms for a Interventions for autism group of developmental disorders that involve impaired communication Behavioural and and interaction with others, repetitive behaviours and restricted interests Developmental Behavioural therapies are designed to reduce and activities. Research may soon change this, but for the moment only interventions problem behaviours and teach appropriate Applied Behaviour surface symptoms constitute an autism diagnosis. Those symptoms, behaviours and skills. Developmental and their severity, and their underlying causes can differ from individual to for autism relationship-based interventions, in contrast, Analysis (ABA) individual. While there is no single intervention that works for everyone, ...... 3 are not designed to directly target behaviours just as there is no single cause of autism, treatments and therapies but instead aim to improve a child’s* ability ABA is a learning programme aimed at which target specific problems can often help reduce or even eliminate Sensory and and interest in social interactions and improving areas such as speech and language, symptoms and difficulties that are associated with autism. communication. This is achieved by using the communication, academic learning, problem motor/physical child’s own interests and actions as a starting behaviours, and general life skills. Current and growing research is overturning the assumption that interventions point to building and improving parent-child symptoms of autism are inborn and remain static and lifelong. Typically- relationship and teaching skills. A qualified consultant defines areas in for autism developing children can lose previously gained skills and milestones of which a particular child has deficiencies and normal development and regress into autism, and some children on ...... 8 When choosing the right intervention(s) for develops a plan on how to work on these. The the autism spectrum present with decreasing symptoms over time. A your own child, start from their unique needs programme breaks skills into small tasks, substantial minority of ASD children also reach documented ‘optimal Nutritional and personalities. Family situation, including which are taught through repetition by availability of help and support from family therapists working with the child on a one outcomes’ and subsequent loss of diagnosis. Research has shown and Biological that even those children who reach ‘optimal outcomes’ can still struggle members, friends and volunteers should to one basis. When the child does the task with remaining issues such as social anxiety or cognitive impairments, Therapeutic also be taken into consideration. It is always successfully, s/he is rewarded. recommended that parents research each illustrating that the primary goal of professionals and parents should Approaches option in depth (detailed information on some A variety of play-based activities can make an always be to improve health, overall functioning, level of independence ...... 13 interventions is available on thinkingautism. ABA session fun for children. Undesirable or and quality of life of the individual, regardless of the label. org.uk), and by talking to professionals harmful behaviours, like aggression or self- Communication and especially to other parents in similar harm, are discouraged or ignored. As the child Produced in order to provide parents and carers with an overview situations. Seeing these various interventions learns the skill and it becomes automatic, of some interventions for autism available in the UK, this Strategies and programmes in action by visiting families tangible rewards are faded away and replaced booklet focuses on therapies and treatments that can be home- and Teaching already running them, or centres or home by social reinforcements, like praise. Data is based and in which parents can play an active role. The words Therapies providers will also help you make the decision taken throughout the session for all tasks, so treatment and therapy have similar meanings. They both imply ...... 22 that is best for your child and your family. that progress can be tracked and modifications management and care that can ameliorate debilitating symptoms made. The programme can run in tandem with and improve quality of life. As such, treatment and therapy must targets set by other professionals, such as be individualised in order to have the best chance of success. An About Thinking * The words child and children are used in occupational or speech and language therapists individualised plan means choosing among the best options for Autism this document a great deal; however, our charity knows that people of all ages can learn every person, targeting their specific symptoms and difficulties. Traditional Lovaas approach, Verbal Behaviour ...... 24 and develop in all ways. Please know that all We hope that this booklet offers some understanding of the treatments and therapies can be helpful to many and Pivotal Response Therapy are types of choices available. individuals, regardless of age. ABA. A successful programme is likely to use

2 www.thinkingautism.org.uk www.thinkingautism.org.uk 3 Behavioural and Developmental Interventions a combination of aims and methods from all loving interactions between the child/adult and understandable as, again, it is chosen by the types, depending on the needs and character DIR®/™ their caregivers are at the core of the model. person with autism. of the child. Floortime play integrates the D, I and R, so that All human beings require a sufficient quantity A traditional ABA approach recommends 20-40 DIR/Floortime was created by Dr Stanley the child/adult with autism can evolve towards and quality of social interactions. Sadly this is hours per week of therapy, as well as therapist Greenspan and Dr Serena Weider. Parents and independent thinking, sustaining warm, loving sometimes difficult for individuals on the autistic workshops and meetings with consultants. caregivers are coached to provide the intervention relationships and having fun! spectrum. I.I. is a way of socially including This can be time consuming and expensive, from a DIR practitioner. The DIR practitioner a person with autism whilst simultaneously however, even a smaller number of hours per meets with the family once a month, or more l Further information can be found on icdl.com or teaching him/her how to be more social and week can often result in improved skills and frequently if preferred. stanleygreenspan.com making these social interactions increasingly behaviours. easier to access. It is based on research on DIR stands for Developmental, Individual how these communication skills are developed A consultant should hold a BCBA qualification Differences, Relationship-Based: naturally. awarded by the US-based Behavior Analyst Intensive Interaction Certification Board. The UK Society for Developmental: Parents are coached in By making social interaction easier, I.I. Behaviour Analysis is the UK regulatory industry understanding their child’s level of self-regulation Intensive Interaction is a naturalistic, nurturing, makes subsequent learning easier as the body uk-sba.org. and emotional functioning, and how to support learner-centred, play-based therapy that aims child/adult learns to relax, trust and truly them to develop the next capacity. These nine to increase learning and development more enjoy the company of others; to increase Several local authorities in the UK will now fund developmental capacities are important for typically via quality relationships and play. their ability to read and use body language, ABA. There are also some special schools that healthy emotional, social and intellectual growth: facial expressions, eye contacts, and offer ABA as part of the curriculum. Most of 1.To be calm and interested in their surroundings; It focuses on addressing some of the key intonation; and to become more flexible and them take pupils placed by local authorities, 2.To engage emotionally with others; 3.To difficulties and impairments present in to explore and trust the world around them. and some have a limited number of fee-paying initiate and respond in two-way purposeful autism by working on and developing social places. communication; 4.To communicate in a complex interaction, relationships, flexibility, and reducing To access I.I. there is a Facebook group for way; 5.To think imaginatively; 6.To think logically stress and anxiety. I.I. supports the child/ parents, one-day as well as advanced courses l More information, including the evidence base for and develop ‘theory of mind’; 7.To see the many adult via ever more meaningful interactions, run at various locations around the UK, and ABA, can be found in Thinking Autism ABA info-sheet reasons for things; 8.To be able to think in shades “conversations”, games and relationships. various books and DVDs. I.I. consultants can in resources section of the website of grey; 9.To be able to self-reflect. It does this in a respectful, joyous, dynamic be called to your home to work with you and thinkingautism.org.uk and playful way, continuously adapting to the your child with autism and many schools and Individual Differences: In autism, sensory, motor, individual learner and his/her interests. I.I. professionals around the UK and in other psychological and biomedical differences are the sessions are meant to be highly enjoyable for countries offer Intensive Interaction. norm. These profoundly affect each individual’s both parties involved! experience within their bodies and in their world. l More information, The parent and the DIR practitioner work together I.I. is highly individualised and involves including the evidence with the broader network of professionals to sensitively tuning in to learners to ensure that base for I.I., can be found remove challenges, foster development and the parent/therapist works at their level. Mainly in the Thinking Autism support the child/adult with autism in reaching taking the lead from the learner means that guidebook, available in their potential. the activity, “conversation” or game is highly the resources section on motivating, the pace and tempo are just right thinkingautism.org.uk Relationship-Based: The emotionally charged, since they are learner-led, and the content is

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seeking parent guidance; flexible thinking; sourced who will demonstrate techniques and social referencing; developing memory The Son-Rise Program® provide training and feedback. There are also Relationship abilities that enhance learning individually and independent practitioners who have previously Developmental collaboratively; making decisions, problem (SRP) been part of SRP that can provide similar Intervention® solving in the moment and through reflection; services. and developing and maintaining friendships and SRP began in the 1970’s in America when one relationships. family, seeking help for their son, created a The size and scale of each programme can RDI aims to empower parents by helping them child-centred social therapy programme, now be adapted to meet the child’s and family’s to better understand how autism impacts their A RDI programme focuses on quality carer / known as Son-Rise. needs. Programmes can be full or part time. child and how they can ‘guide’ their child to child interactions that are tailored to the child’s SRP requires a team of therapists. The team overcome obstacles associated with autism. unique development with the aim of moving SRP focuses primarily on social interaction can include family members but many teams RDI is based on research both in general the child forward developmentally, socially and through play. The activities of play are child- use volunteers sourced locally from universities child development and autism, and works emotionally. The carer uses everyday activities led in the early development phases. As the and colleges. The most expensive resource is on building the child’s capabilities in social such as housework or play to target RDI goals. connections between child and therapist time. Some programmes can run for over five interaction, overcoming ‘black and white’ rigid Filmed interactions allow the consultant to develop, SRP becomes a more adult directed years. Financial contributions can sometimes thinking and gaining own emotional recognition provide feedback to the family. Families use programme where play is more structured to be obtained from Local Authorities to help fund and self-control. the RDI Platform, which is a secure database, help the child to learn. programmes. to share these filmed interactions privately with Parents work with a RDI Certified Consultant their consultant and to access other important SRP focuses on four key areas of social l More information and useful links: to help their child master the developmental components of the programme. Eventually, development: Eye Contact and Non-Verbal Son-Rise Programme: autismtreatmentcenter.org; milestones autism has restricted, such as the consultant wants to teach and hand over Communication, Communication, Interactive Play Therapy Based Programmes: the ‘RDI guiding principles’ to the family and Attention Span, Flexibility. Progress is plotted autismseminars.org, autismathome.co.uk. fade the role of the professional service. RDI on the SRP Developmental Model. Consultants train through RDIConnect and recertify yearly. SRP is home-based, with a dedicated, distraction-free playroom, possibly a bedroom, l For further information rdiconnect.com. which helps to create a favourable learning Information on Education, Health and environment for the child. Interaction is on Care (personal care plan) funding: a one-to-one basis, with the adult using the brightfuturesschool.co.uk/resources/ three ‘E’s’ (energy, enthusiasm, excitement) to engage the child.

Parents are usually the leaders of their own programmes. They receive their training through UK-based SRP training events, or by attending the Autism Treatment Center of America. A UK-based SRP teacher can also be

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Sensory and Motor/Physical and slow breathing Sight There are a range of interventions which l Sports-based activities such as running, use sight or which are designed to improve Interventions for autism jogging, rebound therapy (trampolining) visual processing and/or light sensitivity, l Creative therapies such as dance including: Motor and physical interventions are therapies professionals (such as occupational therapists. movement therapy l Lenses such as Ambient Prism Lenses which make use of, or which aim to improve, behavioural optometrists, or physiotherapists), l Other interventions in which physical l Lights such as Lightwave Stimulation motor functioning--control, coordination and parents and carers, and by people on the exercises/movement activities are a significant l Overlays such as Coloured Overlays movement of the body. Sensory interventions spectrum themselves. We have provided a component such as Brain Gym® and The l Vision Therapy are treatments and therapies that make use of, non-exhaustive list of therapies and activities Movement Program. or aim to improve functioning and balance of that are available in the UK, several of which Manipulation interventions include a range one or more of the senses. are covered in greater detail. Many of these techniques have been reported of treatments and therapies in which someone by parents to bring numerous benefits. Some, other than the patient manipulates or moves Most children Combined-Multi Component like karate or meditation, have also had these his or her body. In many cases, manipulative and adults Therapies There are a number positive effects confirmed by scientific studies. interventions focus primarily on the structures with of interventions that use a wide and systems of the body, including the bones autism have range of motor and sensory Touch There are some interventions which use and joints, soft tissues, and circulatory and movement techniques, including: touch or which are designed to reduce tactile lymphatic systems. Specific manipulative and and coordination l Occupational Therapy defensiveness, including: body-based practices include: difficulties and/or l Sensory Integrative Therapy l Brushing technique l Acupuncture sensory processing l Retained Reflexes Therapy l l Chiropractic problems. Frequently, the l The Low Arousal Approach l Weighted Items such as weighted vests and l Massage such as Tui Na and Qigong severity of the motor-sensory l Equipment-specific approaches weighted blankets massage for autism complications directly relates such as Therapy Ball Chairs l Osteopathy, including Visceral Osteopathy to the severity of autism. In l Multi-Sensory Environments such Hearing and Listening Music therapies and l Patterning therapies addition vestibular (balance) and Snoezelen programs such as Orff Approach have been l HANDLE® proprioception (sense of position of l Restricted Environmental shown to improve social and communication l The Scotson Technique® own body and movement) problems are Stimulation Therapy skills in autism. In addition to interactive music often present. therapies, some listening interventions use Various acupuncture techniques developed Physical Activities There listening to sounds through headphones, and specifically for autism have been shown in Addressing these dysfunctions can help are many interventions are designed to improve auditory processing, studies to be effective at reducing disabling in a variety of ways, from improving gross based around physical sound sensitivities and other sensory symptoms associated with autism and and fine motor skills to tackling sensory activities undertaken by issues. Some of those include The Listening improving executive functioning. Unfortunately sensitivities thus reducing discomfort, the person on the autism Program®, Auditory Integration Training®, those therapies and skilled practitioners stress and anxiety. As the person is spectrum, including: Johansen®, and Tomatis® are currently not widely available outside less overwhelmed, awareness, focus, l Martial arts-based activities of China. However a simpler technique of executive functioning and social skills such as tai chi, taekwondo Smell and Taste There are some Qigong massage, which is loosely based on can improve. or karate interventions which use smell and taste or acupuncture and Chinese medical practice, has l Mind-body which are designed to help with smell and taste been developed in recent years and has been Sensory and motor interventions interventions such as problems such as Aromatherapy. shown to help reduce many problem behaviours can be delivered by health care yoga, meditation and symptoms in a large number of children.

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Some of the more widely used and better- “Massage is our special time with S. We try to talk, we laugh understood therapies are discussed in more “Child-to-parent bonding improved, and detail below. the experience of touch and relationship and sometimes struggle but we are very intensely together. I normalized for parent and child. Children see direct benefits: his sleep improved almost immediately, Sensory Massage were better able to make eye contact, he communicates better and I am getting reports of Therapies for autism focus, and listen, and parenting stress improved attention from the school.” decreased. This program can be recommended to parents and early addition to being used to address physical osteopathic massage are relieving constipation Qigong Sensory Treatment (QST) problems and injuries, it is also used widely in and improving the frequency of bowel intervention programs at the time of massage for autism is a massage treatment China to address chronic problems such as movement. The use of visceral osteopathy that works by decreasing tactile (touch) and autism diagnosis. It can be expected headaches, constipation, irritable bowel and has been reported to have a positive effect in other sensory abnormalities present in almost to improve educational outcomes sleep problems, all common in autism. many patients suffering from Irritable Bowel all children and adults with autism. The QST for children and reduce stress in the Syndrome. Recent studies have suggested that protocol is a 15-20 minute whole-body It is thought that this massage, and touch- mobilisation of the gut through such manual preschool classroom environment.” massage that is administered by parents at therapies in general, reduce stress and manipulation techniques may enhance the flow home on a daily basis. [PMID: 25878901] balance the autonomic nervous system by of the lymphatic system, thus improving the Studies have shown overall reduction in reducing anxiety, aggressiveness and irritability overall functioning of the immune system. severity of autism-related symptoms after Parents reported that the massage helped (‘fight or flight’ sympathetic responses) several months of regular QST, including to build a stronger bond and improved the and increasing relaxation (‘rest and digest’ The first study on the use of visceral osteopathy improvements in behaviors, communication, experience of touch and relationship. Children parasympathetic responses). Many parents in children and adolescents with autism has and sensory symptoms. In addition, lots sought out touch and affection from their who have implemented regular massage report reported some promising positive results, such of parents report improved child-to-parent parents, and parents felt closer and more improvements in sleep, social skills, stress as improvements in gut function and overall interactions, bonding, and decreased parenting connected [PMID: 25878901] levels, outbursts, speech, repetitive behaviour, behaviours, concluding that this treatment may stress. sensory and digestive problems. In addition, be of benefit to children with autism and GI l qsti.org includes detailed practising the massage daily can further disturbance. Qigong massage is suitable for all ages, information on QST, including strengthen the family bond, and so reduce and although the results are more information to help parents decide if parental stress. l ibccare.co.uk for further information rapidly achieved in younger children, this therapy would be suitable. others can also greatly benefit. l tuinacentre.co.uk has information on UK training The Scotson Technique® (TST) Success is influenced by how Tui Na Massage, which is courses for parents. TST® was developed by Linda Scotson, based well parents can learn the based on similar principles on her research into respiratory systems of technique, adapt it to their as QST, also works by Visceral Osteopathy children with disabilities that showed that many individual child, and engage in reducing touch and Visceral osteopathy is an osteopathic treatment neurological problems led to deep respiratory the massage daily. other sensory sensitivities that focuses on mobilising and improving the problems and that breathing influenced cerebral in autism. Tui Na, function of the gut. This is done in a way that is blood circulation, body structure, posture, sometimes called similar to a simple abdominal massage, but is speech production, sleep and general health. ‘Chinese massage’, is more specifically applied. Children with autism, cerebral palsy and brain a division of traditional injury often have immature and abnormal Chinese medicine. In Some of the potential benefits of visceral breathing patterns, which impede the delivery

10 www.thinkingautism.org.uk www.thinkingautism.org.uk 11 Sensory and Motor/Physical Interventions of oxygen to tissues, including the brain and Auditory Integration Training (AIT) noises; difficulty following verbal instructions or gut and contributing to abnormal sensory, Hearing and Listening Auditory Integration Training, sometimes commands; struggling with language delay or motor and metabolic function. programs called Sound Therapy, aims to improve disorder. abnormal sound sensitivity and behaviours The treatment is administered by applying that might result from it. It involves listening Some of the reported changes following AIT gentle pressure on the child or adult’s chest The Listening Program (TLP) to electronically modified music through have included improvements in the child’s or and abdomen, which attempts to mimic the People with autism experience sound headphones, which provides stimulation to the adult’s disability: reduction of sound sensitivity, pressures of breathing on the body’s internal sensitivities, visual, vestibular and other hearing mechanism. This in turn can improve being better able to cope with background tissues. sensory issues which can affect their ability to attention and understanding, and help one be noise, improved focus and understanding, communicate and process sensory information more ‘in tune’ with the environment. improved speech/clarity of speech, increased The Advance Centre in West Sussex provides in an organised way. In order to listen and awareness and interest in conversation. training sessions in TST®. Once trained, function well in daily life we need to be able to Some behaviours indicative of abnormal parents carry out the daily therapy at home. process sound as it changes in pitch, volume, processing and distortion of sound and/or l thesoundlearningcentre.co.uk for further The exercises are very gentle and can be done spatial location and across time. extreme hearing sensitivity are covering of ears, information when the child/adult is asleep or watching their running from, or crying in response to loud l autism.com/understanding_ait_summary for favourite programme TLP is designed to retrain the brain and ear to sounds; being easily distracted by random research studies process sound more effectively. This is seen l treatbreathinginautism.com for further information to reduce sound sensitivities, improve listening and communication and make it easier for the The Movement Program (TMP) autistic person to function in daily life. TMP is a physical activity program that aims to develop a wide range of fundamental sensory Adding in the use of bone conduction to TLP Nutritional and Biological abilities and lead to improved reading, balance can improve vestibular function, proprioception and coordination. It is designed for children and visual skills. This can have a wide range Therapeutic Approaches from around 7 years upwards. of benefits including reducing the ‘’ behaviours such as flapping, jumping and Children and adults with autism suffer from Comorbidities in Autism Spectrum Disorder). It TMP is specifically designed to be easily spinning that are often seen in autism. (*see health problems much more commonly than their is also a sad fact that mortality is significantly accessed at home without the need for published research) peers. These health problems include seizures, increased in autism, with much higher death rates specialist input from an Occupational Therapist headaches, gastrointestinal problems, various than in the general population. or other movement and sensory specialist. TLP is a technologically advanced listening nutritional deficiencies, metabolic conditions, therapy with specifically designed high compromised immune system including allergies Symptoms of health problems in autism are It is delivered direct to a web-connected device definition recordings and music. It is is available and autoimmune disorders and many more not always visible on the surface or easy to via individual log in details, and followed for 12 through iPod Touch or via the TLP Online (for references see our scientific review Medical detect, but they may influence the child’s weeks, 5 days a week, for around 15 minutes platform for ease of use. each day. l learning-solutions.co.uk for further information on “Problem behavior in patients with autism may be the primary l movementprogram.com for more information (10% TLP and UK providers or sole symptom of the underlying medical condition, including discount with ‘learningsolutions’ code) l advancedbrain.com/the-listening-program- research/ for research studies. some gastrointestinal disorders” [PMID 20048083]

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at all in others. problems include: irritability, aggression, destructive In a survey of 220 people conducted by our charity, more than behaviours, hyperactivity, sleep problems, anxiety, 95% of respondents who had used treatments for autism Further information obsessive and rigid behaviours, strange posturing found those treatments to be beneficial and found on published studies (for example bending over furniture) or movements, 24% can be found in our bloating, screaming, chest banging, biting and those benefits to belife-changing. publication Medical other types of self harm. Recent research has also In regard to specific problem areas, Comorbidities in Autism confirmed that, contrary to commonly-held beliefs, Spectrum Disorder and the presence of gut problems in children with data based on parental autism is in most cases not due to picky eating or 57% saw improvements in sociability, reports can be found receiving medication. 53% in sleep problems, in our recent survey 50% in anxiety, (available on request). Several very promising treatments are being studied at the moment following many positive 50% in aggression, Gastrointestinal problems are common reports by parents and doctors. Some of those 66% in eye contact, in autism. They include: reflux, chronic constipation approaches include daily supplementation with or diarrhoea, colic, digestive enzyme deficiency, digestive enzymes and probiotics, or special diets in receptive language, 48% low absorption of nutrients, bacterial dysbiosis that restrict sugar and complex carbohydrates. A 47% in expressive language, (presence of harmful bacterial in the gut), food diet that excludes gluten (protein found in wheat 23% in self-injurious behaviour, and allergies and sensitivities and many others. and some other grains) and casein (protein found in milk) has gained wide popularity amongst parents 73% in bowel problems. These problems often stay hidden and go and clinicians in recent years. The positive effects of untreated because they are not visible on the this diet in a number of children and adults are likely surface, but instead present in unusual ways and linked to the recent discovery that some individuals behaviour, worsen severity of their autism-related result of a physical cause, for example reflux pain through problem behaviours. This is especially true with autism are sensitive to common food proteins symptoms, and undermine their quality of life. or seizures. for younger children and those who are not able to such as those found in wheat and milk. On the other hand, diagnosis and treatment of communicate effectively. Negative behaviours that these medical conditions can often lead to an Autism is not a single condition but includes many are often dismissed as ‘just part of autism’ but can Ketogenic diet was designed almost a hundred improvement in many symptoms, including diverse groups of individuals who are affected by in fact be signs that the person is suffering health years ago by a Mayo Clinic doctor in order to irritability, aggression, anxiety, self-injurious, autism for different underlying biological reasons self-stimulatory and repetitive and obsessive and suffer from different comorbid health problems. behaviours. Improvements in the core symptoms It is therefore not surprising that no single health “Although treatment strategies for children with autism spectrum of autism, speech and communication, sociability concern will impact every individual with disorders are under development, the ketogenic diet is available and imagination have also been reported. autism, nor is any single treatment approach appropriate for all. While, for example, dietary now and could offer multiple benefits. For example, children It is crucial never to dismiss concerns regarding intervention in particular is reported to be beneficial with autism and uncontrolled seizures have few options, and this self-harming, aggression, night-waking, change in in a large number of cases, there is no ‘one size research suggests a ketogenic diet could reduce seizures and appetite, severe anxiety, tics, and many more as fits all’ diet. Similarly, treatment with nutritional ‘just autism’. None of these behaviours are part of supplements that address metabolic problems improve behavior.” Susan Masino, PhD, Trinity College, Harford, the autism diagnosis, and there is much evidence are shown to have life-changing effects in some Conn. 2013. to show that challenging behaviour is often the children and adults with autism, but have no effect

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overall functioning. Many parents have reported When you get your child’s diagnosis you can be told that there is It is important to remember that not improvements in their child’s behaviour and no future to look forward to for them. Everything appears bleak. all individuals with autism suffer functioning at school and at home when offending Thinking Autism completely turns that on its head. It has changed gastrointestinal or nutritional deficiency foods are avoided, as for example in the case of problems, so dietary and other foods containing gluten (see previous section). not only my son’s life but our whole family’s life. interventions will not be appropriate for (Feedback from a parent) all. It is important to always seek advice Problems in the function of the immune system and recommendations of a qualified and chronic inflammation have also been found in practitioner before undertaking any dietary a subgroup of people with autism, and it is believed control in patients, and has gained chain triglyceride diet and low glycemic index or other intervention. that some of the treatment agents that are reported renewed interest and wide application in recent treatment. All of them require medical guidance and to help reduce autism-related symptoms work years. The diet is high in fat, adequate in protein supervision. by lowering the inflammation and by helping the and very low in carbohydrates. This combination • charliefoundation.org for more information Allergies and food sensitivities are body defend itself from harm. Sometimes simply changes the body’s metabolism and forces it to present in many children and adults with autism, correcting nutritional deficiencies, such as the burn fats rather than carbohydrates for energy. Some more recent medical approaches aim who also often suffer intolerances to various things mineral zinc or vitamin D (see previous section), can Other known effects of this diet are lowered to improve the natural function of the gut and in their environment. Sometimes their immune improve function of the immune system. levels of glucose and improved insulin reduce reflux and inflammation through specific system does not work well in comparison with resistance, reduced levels of inflammation supplementation protocols, rather than to non-ASD people. Those problems are occasionally It is difficult, however, to know by looking at people as well as raised levels of ketone bodies in focus on excluding specific food groups. One visible on the surface, as in the case of eczema, if their immune system is balanced and if they suffer the blood. such approach is the Nemechek protocol, asthma, allergic rhinitis (runny or stuffed sinuses, allergies. When these issues are suspected it is which aims to reverse and control small- red eyes), or frequent ear infections. On the important to speak with a doctor and specialists All of those effects of ketogenic diet, or intestine bacterial overgrowth, often referred to other hand, these problems can sometimes be to determine what tests should be carried out and some that are still unknown, could as SIBO. There is evidence that SIBO is hidden, with the only visible signs being worsening whether to address problems with medicines such be behind improvements in autism present in a large number of children and of problem symptoms and behaviours—for as antihistamines. In contrast to true allergies, symptoms that have been reported adults autism, even in those who do example, sleep problems, irritability and tantrums, which can be detected through medical tests, by researchers and doctors. For not show any external or obvious gut hyperactivity, lack of focus, daytime fatigue, anxiety, some milder sensitivities and intolerances—for example epilepsy is very common problems.*(see page 21) obsessiveness—that are often wrongly attributed to example to foods, chemicals, pesticides, perfumes in autism, and latest research has ‘being autistic’. and even scents and detergents—can often only be demonstrated that successful Many individuals with autism have low detected by removing the suspected item from the treatment of both seizures as well levels of certain vitamins and minerals, Treating allergies and avoiding foods and things child’s environment or diet and reintroducing it as subclinical epileptiform activity, including zinc, magnesium, iron, vitamins in the environment that a person with autism is later to observe if there is any worsening of which is found in the overwhelming B-6 and B-12, vitamins D and E, and sensitive to can often result in improvement in symptoms or behaviours. majority of individuals with autism even folate. Supplementing some of those negative and challenging behaviours and better in the absence of convulsive seizures, nutrients can not only normalise their levels can often lead to improvements in but can address some of the underlying behaviours and functioning in affected biomedical problems frequently found in “Care providers should be aware of the potential impact of individuals. autism, such as immune abnormalities allergic diseases on behavioral symptoms in ASD children.” or metabolic problems. There are clinical There are several variations of this diet, reports of supplementation improving autism- Dr Jyonouchi, New Jersey Medical School such as the modified Atkins diet, medium- related symptoms and behaviours.

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affected have more oxidative stress in their bodies. bodies and their brains. It is becoming increasingly “Dear Thinking Autism, Just to let you know that information you common to investigate minute variations in DNA provided had a positive outcome… The introduction of these Several treatment agents that target the problem called single nucleotide polymorphisms (SNPs) of oxidative stress have already shown great when planning treatment pathways. interventions by our doctor meant that in just five days our child promise for reducing negative symptoms in autism. showed a marked improvement in behavioural responses, a For example, the amino acid N-acetylcysteine In the majority of investigated cases abnormal reduction in OCD rituals and rigidity, reduction in oral defensiveness (NAC), which is safe and available over the metabolism is not linked to genetic causes, and counter, has been found to reduce irritability in correct identification and treatment of metabolic enabling new foods to be introduced on their first attempt… These autism. In another small study, a subset of children and mitochondrial issues can bring about interventions have given the whole family a better quality of life who supplemented with vitamin B12 showed improvement in behaviours and functioning. and more social opportunities to help develop our child, giving them improvements in both oxidative stress levels A growing number of published studies and severity of autism related symptoms. have observed that various nutritional the opportunity to just be a child like any other! supplements and interventions that (Feedback from a parent) A powder extract derived from help metabolic energy production broccoli sprouts, called sulforaphane, such as NAC (see above), ubiquinol is another dietary supplement whose (co-enzyme Q10), carnitine, Abnormal response to stress is very effects through calming and lowering the stress potential for improving both the carnosine, biotin, thiamine, ketogenic common in children and adults with autism. Their responses. metabolic dysfunction as well as behavioural diet, tetrahydrobiopterin (BH4), bodies overreact to what other people would not symptoms in some cases of autism methylcobalamin (vitamin b12) and percieve as a fearful or threatening situation, and Aromatherapy has often been reported by parents is under active investigation.Similarly, folinic acid have the potential to also take much longer to calm down afterwards. and professionals to have calming and balancing omega-3 fatty acid supplements also bring about mild or substantial Their hormones and other body systems are often effects, including reducing anxiety and irritability, show good promise in helping lower improvements in autism-related found to be in a state of permanent ‘fight or flight’ improved sleep, and even reduction in frequency of hyperactivity and repetitive behaviours, symptoms in some individuals. response (called autonomic sympathetic activity), seizures. There are many animal and human clinical and improving socialisation. Fatty acids with the absence of the much-needed ‘rest and studies which show that plant essential oils have a are essential for the development Epilepsy and seizure digest’ state (parasympathetic activity). positive impact on the autonomic nervous system and function of the brain. Omega-3 disorders are and can reduce ‘fight or flight’ stress and anxiety fatty acids and fish oils are popular unfortunately very common Aggression, impulsiveness, anxiety and fearfulness, by activating the parasympathetic vagus nerve. nutritional supplements and widely in autism – almost one sleep problems, and difficulties in coping with In addition some essential oils are known to have considered safe. It is believed third of children with new situations are some of the main signs antiepileptic and neuroprotective effects. It should that the powerful antioxidant autism will suffer seizures of dysfunctional autonomic stress response. be noted that inappropriate use of essential oils can properties of these agents is one at some point in their lives, Medications like low-dose propranolol (which have the opposite effects, and it is therefore always of the reasons for their positive compared to only two percent regulates the production of stress hormone best to seek advice of an experienced professional. effect in some people with autism. of typical children. In addition, adrenalin in the body), calming environments subclinical epileptiform activity-abnormal (removing emotional and physical triggers), sports Oxidative stress is an imbalance between Various other metabolic and EEG-is found in the overwhelming majority of such as karate, mild exercises such as qigong and antioxidants and pro-oxidants in the body that can mitochondrial problems are frequently individuals with autism even in the absence of yoga, and meditation are often reported to have be damaging to cells and organs. Children and present in children and adults with autism, visible, convulsive seizures. Seizures are the positive effects and help reduce these disabling adults with autism often have increased oxidative in addition to oxidative stress, showing that leading cause of premature death in autism. symptoms. Touch-therapies such as massage for stress, which is correlated with severity of their they struggle to clear environmental toxins autism (see previous section) also bring positive autism symptoms – those who are more severely and to produce enough energy to fuel their It is often very difficult to know without

18 www.thinkingautism.org.uk www.thinkingautism.org.uk 19 Nutritional and Biological Therapeutic Approaches

Research has shown that people with autism often suffer from various health controlling epileptic seizures and balancing abnormal brain electrical activity. Abnormal subclinical RECOMMENDED READS problems which are not always visible on the surface or easy to detect but which may epileptiform activity has been observed in a large majority of individuals with autism. Several types of affect their behaviour, impact severity of autism and undermine their quality of life. l Navigating the Medical Maze neurofeedback are in existence, including some that with Autism Spectrum Disorder. do not require active participation of the subject and Sue Ming MD and Beth Pletcher proper testing if a person is suffering from situation may change in the near future, as more are thus suitable for individuals with autism who are MD [ISBN-10: 1849059713] abnormal brain activity; apart from whole-body studies emerge. non-compliant or unable to follow instructions. convulsions, seizures can also manifest simply as l How nutritional status, diet and a child ‘momentarily blanking, or appearing to be Neurofeedback (sometimes Several other novel and promising treatment dietary supplements can affect daydreaming’ or having tics, crying spells, facial called neurobiofeedback or EEG approaches are currently being studied for autism, autism. A review. Anna Kawicka grimacing or ‘weird’ body movements. biofeedback) is a form of biofeedback, a including: and Bozena Regulska-Ilow non-invasive therapeutic approach that is being • oxytocin nasal spray tinyurl.com/zefy3yj [PMID 23789306] There is some evidence that treatments that used to treat a number of psychological conditions, • suramin tinyurl.com/ydxex9ns are generally used for some seizure types, such including anxiety, depression, obsessive-compulsive • fecal transplants tinyurl.com/ydxex9ns l Autism: Effective Biomedical as ketogenic diet (see previous section) and disorder, attention deficit hyperactivity disorder • stem cells tinyurl.com/ycrp9653 Treatments? Jon Pangborn PhD cannabidiol, also have a potential for reducing and other conditions which are frequently present • medicinal cannabis tinyurl.com/n7afogx and Sidney Baker MD autism-related problems and behaviours in some in individuals with autism. During sessions brain • high-dose folinic acid tinyurl.com/zefy3yj [ISBN-10: 0974036099] individuals. Autoimmune cause should also be activity is monitored by recording electrodes placed • bumetanide tinyurl.com/ydxex9ns ruled out in some cases, especially in sudden- at designated locations on the head and presented • everolimus tinyurl.com/yblv3yso l Autism: Exploring the Benefits onset epilepsy and where there is a history of on a screen in front of the user. There is growing • arbaclofen tinyurl.com/ya9bfugs of a Gluten- and Casein-Free Diet: autoimmune disease in child’s family. evidence that neurofeedback is effective for • CM-AT digestive enzyme tinyurl.com/ycw42asv A practical guide for families and professionals. Paul Whiteley, Mark Other promising therapies for autism *Our publication ‘Diagnostic Toolkit for Earnden and Elouise Robinson symptoms and difficulties are also Medical Comorbidities in Autism Spectrum [ISBN-10: 0415727634] available and are being intensively studied, like Disorders’ outlines signs and symptoms, those that address the brain and its workings diagnosis and treatment of various medical The above titles, and many more directly, such as Transcranial Magnetic conditions, including gastrointestinal more, can be borrowed Stimulation (TMS), Transcranial Direct Current issues, which are common in children and through Thinking Autism Stimulation (tDCS) and Neurofeedback. TMS adults with autism. members’ library and tDCS have excellent safety profiles and are being used successfully in many parts of the world as treatments for major depression, and DISCLAIMER Thinking Autism does not offer medical advice and we do not endorse any recent studies are showing very good results in practitioners or treatments. It is always important to seek appropriate professional advice reducing autism-related symptoms, lowering before initiating any treatment. Some interventions like diets, probiotics and simple nutritional stress responses, and improving general supplements are inexpensive and easy to implement, but parents should always seek help functioning. Unfortunately, TMS and tDCS and guidance from a qualified practitioner. Your medical doctor or nutritionist and other specialists can advise on tests and help guide treatments. (Thinking Autism can provide, on are not widely available in the UK at present; request, a list of qualified UK practitioners as recommended by members, but do not endorse NHS hospitals and centres that do have TMS or directly recommend any individual or organisation) usually restrict its use to treating depression. This

20 www.thinkingautism.org.uk 21 Communication Strategies and Teaching Methods

The starting assumption of RPM is that individuals certified RPM practitioners in the USA, UK and Communication Strategies and with autism are cognitively intact – the problem is Eire. There is also an international parent support that their sensory systems (visual, auditory, tactile, facebook group ‘Unlocking Voices—Using Teaching Therapies kinaesthetic) have developed differently and may RPM’, offering lots of free learning resources and also have motor planning challenges. Many RPM instructional videos. Difficulties with speech and communication are confidence.GemIIni is another such programme, students have typed that their body does not • Further information halo-soma.org and one of the most disabling features of autism. While providing teaching videos for learning and co-operate with what their brain is thinking, and unlockingvoices.com some individuals with autism suffer from total lack retaining of language. It offers an online system verbal students have typed that what they are of speech, others are able to express themselves of recording the child’s activities and progress, ‘saying’ is not what they are thinking. Examples of techniques for improving social verbally but have problems understanding finer and creating video lessons to practise in various awareness and communication include aspects of communication and social and environments, which can be accessed by During RPM sessions, age-appropriate TALKABOUT, a social communication skills expectations. In all cases these communication therapists, teachers and parents involved with educational information is presented by the package aimed at improving self-awareness and problems negatively affect a person’s the child. parent/teacher to provide intellectual stimulation self-esteem, body language, social and friendship independence and quality of life. and develop reasoning skills. The student is skills. were developed to help There is a growing variety of methods that can taught how to respond by independently pointing people with autism to understand and behave There are many strategies and therapies that be used by people with communication problems –beginning with written choices and then to appropriately in social situations. A social story can be used to improve the child or adult’s ability to assist or replace spoken speech. They come gradually independently spell out responses on describes a social situation in a clear and easy to to communicate. These range from therapies under an umbrella term of Augmentative and various letterboards. This empowers the student understand way, in order to improve the person’s aimed at improving the strength and ability of Alternative Communication (AAC) and range to express their thoughts, opinions, learning and understanding of social expectations, routines, the muscles needed to produce sounds, to from sign language (Makaton™) symbols reasoning. In addition to teaching the skill of situations, upcoming events or abstract concepts. ‘social skills’ strategies that focus on developing and pictures, to computer programmes, apps purposeful pointing RPM principles can be used to The understanding of a particular situation helps understanding of the ways people behave and and complex electronic devices. A type of teach reading, writing, and life skills. the person find an appropriate response in a teaching appropriate behaviours and ways to react ACC popular for autism is Picture Exchange particular social situation. The Social Thinking and communicate in social situations. Communication System (PECS), designed RPM is a relatively low cost method. There is no Program™ developed by Michele Garcia Winner to teach functional communication. A student is need for high-tech equipment and parents/helpers offers further insight on social problem solving, Speech therapists and/or occupational therapists taught to exchange a picture of a desired item can learn how to use RPM by reading books social emotional interpretation and social skills can recommend oral motor exercises, such as for the actual object. Once mastered, the student and joining the parent support forums. There are blowing sucking, tongue movements, breath moves on to using symbols, constructed phrases control exercises and others, with the aim and sentences, making spontaneous requests Autism is a diagnosis of symptoms. These symptoms and medical of enhancing control of oral movements and and comments. Augmentative devices such as comorbidities common to autism are all potentially treatable encouraging a child to take part in therapy. These the programme Proloquo2Go (used on an iPad through a combination of approaches. Thinking Autism, a charity are presented as games and can be carried out in or iPod) are now relatively affordable and have run by parents, arms you with information and support to make a group therapy session, or at home. proved successful. positive changes to your child’s life.

Some programmes such as computer-based (RPM), is a teaching This booklet discusses only a small number of approaches Fast ForWord, or the intensive therapist-led method developed by Soma Mukhopadhyay while parents of children with ASD have found helpful. For more Lindamood Bell therapy, focus instead on working with her severely autistic non- verbal son, information and the latest research in autism treatments, visit developing and strengthening cognitive skills and Tito. He is a published author who now types our website and social media, read our other free publications, improving vocabulary, reading, comprehension, independently. and consider attending one of our events for parents. numeracy, as well as memory, speaking and self

22 www.thinkingautism.org.uk www.thinkingautism.org.uk 23 Build Learn Learn your support Join us for and share about the parent groups, network and knowledge & latest scientific information days, experiences with breakthroughs become a part workshops, of our growing others on how in the field of conferences and to best help community autism other events your child

Thinking Autism is for l parents, carers and family members of children and adults with autism l teachers and teaching assistants l medical practitioners and nurses l speech and language and occupational therapists and other specialists l researchers and students l adults with autism spectrum disorders l advocates At Thinking Autism we l run local parent groups and workshops l hold conferences presenting the latest scientific research and treatments l create and publish booklets and documents, available free of charge l organise and promote webinars on the latest research and practical approaches to everyday autism-related problems l participate in and facilitate research projects l liaise with official bodies and charitable organisations to provide better support for people with autism spectrum disorders and their families.

Thinking Autism is a membership society, although non-members can access many of our services for free. Our members benefit from special offers and discounts and are regularly kept in touch with the very latest discoveries in the treatment of autism.

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Website: www.thinkingautism.org.uk Email: [email protected] Thinking Autism is a registered charity run by parents and carers of children with autism. The information in this guide is for general purposes only and should not be construed as medical advice. Thinking Autism does not take any responsibility or liability for any decision taken as a result of the information contained herein or the external links provided. If you need medical advice, please seek it from a suitably qualified practitioner.

Registered address: International House, 24 Holborn Viaduct, London EC1A 2BN Registered Charity: No. 1113628, Limited Company Registered in England: No. 5594787 www.thinkingautism.org.uk 25