Professionals Toolkit for the Autism Spectrum and Attention Deficit Hyperactivity Disorder (ADHD) Pathways (0-19 years) Updated August 2014 1 Contents 1. Introduction…………………………………………...pg.2 2. Community Paediatric Pathways……………….…..pg.3 3. Autism………………………………………………….pg.4 4. ADHD………………………………………………….pg.11 5. Referral Considerations…………………………….pg.14 1 1. Introduction Welcome to the Autism Spectrum and ADHD toolkit. The toolkit will aid professionals who frequently come into contact with Children & Young People (CYP). This may include health, education, social care and criminal justice professionals. It can also include other professionals who may have a close relationship with the CYP and their families. The pathways outline the processes for professionals to follow, and is intended to not only be a pathway for diagnosis but for identifying early opportunity to start interventions that may benefit the CYP and their families. The pathway and signs and symptoms are taken from NICE guidance (NICE CG128 and NICE CG72). Autism Spectrum and ADHD are conditions that have a great impact on children, young people and their families or carers. Diagnosis and needs assessment can offer an understanding of why a child or young person is different from their peers and can open doors to support and services in education, health services, social care and a route into voluntary organisations and contact with other children and families with similar experiences. All this can improve the lives of children, young people and their families. This guideline covers the recognition, referral and diagnosis of autism spectrum and ADHD in children and young people from birth up to 19 years. This toolkit contains a list of signs and symptoms that you can use as a guide to assist you with making referrals. 2 2. Community Paediatric Pathways 2.1 Community Paediatrics Single Point of Access The pathway below outlines the process for making a referral into the community paediatric service via the single point of access. This will be the point of entry into both the autism spectrum and ADHD pathways. Child with suggestive symptoms or parent has concerns Health Visitor Use toolkit as needed GP Use toolkit as needed School Nurse Use toolkit as needed TRIAGE Lead by paediatricians Child assessed against signs & symptoms Collection of further information No further action needed Signpost Stay under care of paediatrician COMMUNITY PAEDITARICS Single point of access (SPOA) Watchful Wait GENERAL DEVELOPMENT ASSESSMENT Community clinic Care Pathway Autism Spectrum ADHD 3 3. Autism 3.1 Autism Spectrum Pathway SPOA/GDA Referral From community paediatrics only via GDA. Info on referral process given to parents/carers. Assessment Core Autism Team Community Paediatrician Educational Psychologist Clinical Psychologist Speech & Language Therapist * Others as appropriate Multi-disciplinary assessment Multi-disciplinary case discussion Diagnosis based on NICE Criteria 1.5 AUTISM DIAGNOSIS Allocated Autism Family Practitioners Diagnosis and information on autism given to parent/ carers in face to face meeting & confirmed in writing to parents/ carers Share consented information with key professionals Autism Family Practitioners responsible for co-coordinating a multi-agency follow-up appointment with relevant professionals and parents/ carers within 6 weeks assessment for further discussion (TAC meeting) Parents given information about relevant ASD training, local and nationally available intervention approaches and support agencies. *Occupational Therapists, Outreach Teachers, Social Care, CAMHS, Family Support Workers, Health Visitors & School Nurses If there are concerns regarding child protection/ higher level child in need at any point in the pathway, then a referral should be made into CMARAS. NON AUTISM ASSESSMENT OUTCOME Non autism assessment outcome given in face to face meeting & confirmed in writing to parent/ carers and all professionals (as appropriate) & with consent INCONCLUSIVE ASSESSMENT OUTCOME Inconclusive assessment outcome given in face to face meeting & confirmed in writing to parent/ carers and all professionals (as appropriate) & with consent The child/s health visitor/ school nurse is notified of the outcome and the CYP is referred back under their care. They are responsible for cocoordinating a multi-agency followup appointment with relevant professionals and parents/ carers The child/s health visitor/ school nurse is notified of the outcome and the CYP is referred back under their care. They are responsible for co-coordinating a multi-agency follow-up appointment with relevant professionals and parents/ carers within 6 weeks assessment for further discussion (TAC meeting) within 6 weeks assessment for further discussion (TAC meeting) Further exploration of issues. POST DIAGNOSIS MULTI AGENCY WORKING CONTINUES WITH THE CHILD AND FAMILY 4 3.2 Autism Spectrum Signs and Symptoms NICE have developed lists of signs and symptoms that should alert professionals to the possibility of autism at three developmental ages: Preschool 5-11 years of age 11-18 years of age The signs and symptoms in these tables are a combination of delay in expected features of development and the presence of unusual features, and are intended to alert professionals to the possibility of autism in a child or young person about whom concerns have been raised. It is not intended to be used alone, but to help professionals recognise a pattern of impairments in reciprocal social and communication skills, together with unusual restricted and repetitive behaviours. 3.2.1 Signs and symptoms of possible autism in preschool children (equivalent mental age) Social interaction and reciprocal communication behaviours Spoken language Language delay (in babble or words, for example less than ten words by the age of 2 years) Regression in or loss of use of speech Spoken language (if present) may include unusual: non-speech like vocalisations odd or flat intonation frequent repetition of set words and phrases (‘echolalia’) reference to self by name or ‘you’ or ‘she/he’ beyond 3 years Reduced and/or infrequent use of language for communication, for example use of single words although able to speak in sentences Responding to others Absent or delayed response to name being called, despite normal hearing Reduced or absent responsive social smiling Reduced or absent responsiveness to other people's facial expressions or feelings Unusually negative response to the requests of others (demand avoidant behaviour) 5 Rejection of cuddles initiated by parent or carer, although may initiate cuddles themselves Interacting with others Reduced or absent awareness of personal space, or unusually intolerant of people entering their personal space Reduced or absent social interest in others, including children of his/her own age – may reject others; if interested in others, may approach others inappropriately, seeming to be aggressive or disruptive Reduced or absent imitation of others’ actions Reduced or absent initiation of social play with others, plays alone Reduced or absent enjoyment of situations that most children like, for example, birthday parties Reduced or absent sharing of enjoyment of situations that most children like, for example, birthday parties Eye contact, pointing and other gestures Reduced or absent use of gestures and facial expressions to communicate (although may place adult’s hand on objects) Reduced and poorly integrated gestures, facial expressions, body orientation, eye contact (looking at people’s eyes when speaking) and speech used in social communication Reduced or absent social use of eye contact, assuming adequate vision Reduced or absent joint attention shown by lack of: gaze switching following a point (looking where the other person points to – may look at hand) using pointing at or showing objects to share interest Ideas and imagination Reduced or absent imagination and variety of pretend play Unusual or restricted interests and/or rigid and repetitive behaviours Repetitive ‘stereotypical’ movements such as hand flapping, body rocking while standing, spinning, finger flicking Repetitive or stereotyped play, for example opening and closing doors Over-focused or unusual interests Excessive insistence on following own agenda Extremes of emotional reactivity to change or new situations, insistence on things being ‘the same’ Over or under reaction to sensory stimuli, for example textures, sounds, smells Excessive reaction to taste, smell, texture or appearance of food or extreme food fads 6 3.2.2 Signs and Symptoms of possible autism in Primary School Children (Age 5-11 years or equivalent mental age) Social interaction and reciprocal communication behaviors Spoken language Spoken language may be unusual in several ways: very limited use monotonous tone repetitive speech, frequent use of stereotyped (learnt) phrases, content dominated by excessive information on topics of own interest talking ‘at’ others rather than sharing a two-way conversation responses to others can seem rude or inappropriate Responding to others Reduced or absent response to other people’s facial expression or feelings Reduced or delayed response to name being called, despite normal hearing Subtle difficulties in understanding other’s intentions; may take things literally and misunderstand sarcasm or metaphor Unusually negative response to the requests of others (demand avoidant behavior) Interacting with others Reduced or absent awareness of personal space, or unusually intolerant of people entering their personal space Reduced or absent social interest in people, including children of his/her own age – may reject others; if interested in others, may approach others inappropriately, seeming to be aggressive or disruptive Reduced or absent greeting and farewell behaviours Reduced or absent awareness of socially expected behaviour Reduced or absent ability to share in the social play or ideas of others, plays alone Unable to adapt style of communication to social situations, for example may be overly formal or inappropriately familiar Reduced or absent enjoyment of situations that most children like Eye contact, pointing and other gestures Reduced and poorly integrated gestures, facial expressions and body orientation, eye contact (looking at people’s eyes when speaking), and speech used in social communication Reduced or absent social use of eye contact, assuming adequate vision Reduced or absent joint attention shown by lack of: gaze switching following a point (looking where the other person points to – may look at hand) using pointing at or showing objects to share interest 7 Ideas and imagination Reduced or absent flexible imaginative play or creativity, although scenes seen on visual media (for example television) may be re-enacted Makes comments without awareness of social niceties or hierarchies Unusual or restricted interests and/or rigid and repetitive behaviors Repetitive ‘stereotypical’ movements such as hand flapping, body rocking while standing, spinning, finger flicking Play repetitive and oriented towards objects rather than people Over-focused or unusual interests Rigid expectation that other children should adhere to rules of play Excessive insistence on following own agenda Extremes of emotional reactivity that are excessive for the circumstances Strong preferences for familiar routines and things being ’just right’ Dislike of change, which often leads to anxiety or other forms of distress (including aggression) Over or under reaction to sensory stimuli, for example textures, sounds, smells Excessive reaction to taste, smell, texture or appearance of food or extreme food fads Other factors that may support a concern about autism Unusual profile of skills or deficits (for example, social or motor coordination skills poorly developed, while particular areas of knowledge, reading or vocabulary skills are advanced for chronological or mental age) Social and emotional development more immature than other areas of development, excessive trusting (naivety), lack of common sense, less independent than peers 3.2.3 Signs and Symptoms of possible autism in Secondary School Children (Older than 11 years or equivalent mental age) Social interaction and reciprocal communication behaviors 8 Spoken language Spoken language may be unusual in several ways: very limited use monotonous tone repetitive speech, frequent use of stereotyped (learnt) phrases, content dominated by excessive information on topics of own interest talking ‘at’ others rather than sharing a two-way conversation responses to others can seem rude or inappropriate Interacting with others Reduced or absent awareness of personal space, or unusually intolerant of people entering their personal space Long-standing difficulties in reciprocal social communication and interaction: few close friends or reciprocal relationships Reduced or absent understanding of friendship; often an unsuccessful desire to have friends (although may find it easier with adults or younger children) Social isolation and apparent preference for aloneness Reduced or absent greeting and farewell behaviours Lack of awareness and understanding of socially expected behaviour Problems losing at games, turn-taking and understanding ‘changing the rules’ May appear unaware or uninterested in what other young people his or her age are interested in Unable to adapt style of communication to social situations, for example may be overly formal or inappropriately familiar Subtle difficulties in understanding other’s intentions; may take things literally and misunderstand sarcasm or metaphor Makes comments without awareness of social niceties or hierarchies Unusually negative response to the requests of others (demand avoidant behaviour) Eye contact, pointing and other gestures Poorly integrated gestures, facial expressions, body orientation, eye contact (looking at people’s eyes when speaking) assuming adequate vision, and spoken language used in social communication Ideas and imagination History of a lack of flexible social imaginative play and creativity, although scenes seen on visual media (for example, television) may be re-enacted Unusual or restricted interests and/or rigid and repetitive behaviors Repetitive ‘stereotypical’ movements such as hand flapping, body rocking while standing, spinning, finger flicking Preference for highly specific interests or hobbies 9 A strong adherence to rules or fairness that leads to argument Highly repetitive behaviors or rituals that negatively affect the young person’s daily activities Excessive emotional distress at what seems trivial to others, for example change in routine Dislike of change, which often leads to anxiety or other forms of distress including aggression Over or under reaction to sensory stimuli, for example textures, sounds, smells Excessive reaction to taste, smell, texture or appearance of food and/or extreme food fads Other factors that may support a concern about autism Unusual profile of skills and deficits (for example, social or motor coordination skills poorly developed, while particular areas of knowledge, reading or vocabulary skills are advanced for chronological or mental age) Social and emotional development more immature than other areas of development, excessive trusting (naivety), lack of common sense, less independent than peers Factors associated with an increased prevalence of autism A sibling with autism Birth defects associated with central nervous system malformation and/or dysfunction, including cerebral palsy Gestational age less than 35 weeks Parental schizophrenia-like psychosis or affective disorder Maternal use of sodium valproate in pregnancy Intellectual disability Neonatal encephalopathy or epileptic encephalopathy, including infantile spasms Chromosomal disorders such as Down’s syndrome Genetic disorders such as fragile X Muscular dystrophy Neurofibromatosis Tuberous sclerosis 10 4. ADHD 4.1. ADHD pathway Referral Info on referral process & next steps given to family/ carers Assessment Mental Health Assessment clinic for comorbidity Clinical Psychologist Consultant Psychiatrist ADHD Specialist Nurse Multi-disciplinary assessment Multi-disciplinary case discussion Diagnosis based on NICE criteria 1.5 Non ADHD Outcome Assessment Diagnosis of ADHD Treatment & Management Including multi-agency care planning Behaviour support Drug therapy Drug & Behaviour therapy Education Links Shared Care Reviews 11 Referred back as appropriate School Nurse/Health Visitor copied in to ‘no diagnosis’ letter Signposted to appropriate services 4.2 ADHD Signs and Symptoms NICE states that moderate ADHD in CYP is taken to be present when the symptoms of hyperactivity/ impulsivity and/or inattention, or all three, occur together, and these are associated with at least moderate impairment, which should be present in multiple settings (for example, home and school or a healthcare setting) and in multiple domains (domains refer to a type of social or personal functioning in which people ordinarily achieve competence, such as, achievement in schoolwork or homework; dealing with physical risks and avoiding common hazards; and forming positive relationships with family and peers), where the level appropriate to the child’s chronological and mental age has not been reached. Symptoms and Impairment Map of Medicine (2012) Moderate symptoms: Persistent hyperactivity e.g. frequent fidgeting, restlessness, difficulty engaging in quiet activities Impulsive behaviour e.g. interrupting conversations, difficulty waiting in line Inability to maintain attention e.g. appearing distracted or forgetful, problems following instructions Severe symptoms: All symptoms above present together in multiple settings with significant impairment Examples of impairment: Non-compliance Mood swings or aggression Peer unpopularity Academic underachievement Sleep disturbance Tantrums Motor difficulties or tics 12 Learning problems Immature language Low self-esteem Absentmindedness Social and/or emotional immaturity Excessive conflict with parents ADHD should be considered in all age groups. Adjust symptom criteria for ageappropriate changes in behaviour. Factors associated with an increased prevalence of ADHD A diagnosis of epilepsy or electroencephalographic abnormality Heavy alcohol consumption, drug abuse, and smoking during pregnancy Gestational age less than 35 weeks 13 5. Referral Considerations 5.1 Considering the possibility of autism and/ or ADHD Be aware that: Signs and symptoms should be seen in the context of the child’s or young person’s overall development Signs and symptoms will not always have been recognised by parents, carers, children or young people themselves or by other professionals When older children or young people present for the first time with possible autism, signs or symptoms may have previously been masked by the child’s coping mechanisms or a supportive environment It is necessary to take account of cultural variation, but do not assume that language delay is accounted for because English is not the family’s first language or by early hearing difficulties Autism may be missed in children or young people with an intellectual disability, autism may be missed in children or young people who are verbally able, autism may be under-diagnosed in girls Important information about early development may not be readily available for some children and young people, for example looked-after children and those in the criminal justice system Signs and symptoms may not be accounted for by disruptive home experiences or parental or carer mental or physical illness. Discuss developmental or behavioural concerns with parents or carers, and the child or young person themselves if appropriate. Discuss sensitively the possible causes, which may include autism, emphasising that there may be many explanations. 14
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