City and Hackney Autism Service Leda Veloso January

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City and Hackney Autism Service Leda Veloso January, 2018

City and Hackney Autism Service Leda Veloso January, 2018

What is Autism? • Autism is a lifelong developmental condition • Triad of impairments:

What is Autism? • Autism is a lifelong developmental condition • Triad of impairments: • Difficulty with social communication • Difficulty with social interaction • Difficulty with rigidity and repetitive behaviours • The condition is characterised by its diversity. • Autism as a term is used to cover Autism, Asperger Syndrome and Atypical Autism. (NICE guidelines) • “Once you’ve met one person with autism” (Dr Lorna Wing)

Social Communication • Speak using unusual volume, pitch, intonation, rate, or rhythm. • Use

Social Communication • Speak using unusual volume, pitch, intonation, rate, or rhythm. • Use odd language or repeat the same things over and over again. • Find it difficult to hold a two-way conversation • Find it difficult to explain how they feel using words, expressions, tone of voice, and gesture • Difficulty understanding the reasons behind the actions or idea or intentions of others. • Literal interpretation of what people say. • Do not use gesture to accompany speech.

Social Interaction • Poor or unusual eye contact. • Are unaware of social conventions/appropriate

Social Interaction • Poor or unusual eye contact. • Are unaware of social conventions/appropriate social behaviour or are aware but don’t understand the purpose. For example they may not understand the importance of taking turns during a conversation or social interaction is scripted. • Difficultly reading social cues and other non-verbal communication/body language. • Are indifferent or averse to physical contact and affection. • Prefer solitary activities and do not try to make friends or would like to make friends but don't know how.

Restricted, repetitive patterns of behaviour, interests, or activities • Have an overwhelming (often narrow)

Restricted, repetitive patterns of behaviour, interests, or activities • Have an overwhelming (often narrow) interest in something, ie: transport systems; Dr. Who; field recordings; Alice in Wonderland; animals; football • Need specific routines or rituals, such as always going to the shops the same way. • Repeat the same movements, ie. Rocking or hand fidgeting, self-soothing motions. • Be hypersensitive to certain sounds or light. • Focus upon minor details but miss the big picture. • Difficulty with change or unpredictability.

Co-existing Disorders • • • Anxiety 50% OCD 30% Depression 50% Psychotic Disorders 10%

Co-existing Disorders • • • Anxiety 50% OCD 30% Depression 50% Psychotic Disorders 10% Suicide ideation 66%, plans or previous attempts 35% Personality Disorders (Narcissistic, Schizoid & Schizotypal) high misdiagnosis* ADHD 40% Gender Dysphoria – higher than average rates Anorexia (women) high rates – both interact* Learning Difficulties and Learning Disabilities- ? % (Lai & Baron-Cohen, 2015)

The issues with diagnosing Women… • Under diagnosed in childhood, tend to have less

The issues with diagnosing Women… • Under diagnosed in childhood, tend to have less behaviours that challenge and be less rigid. • Harder to identify in adulthood. • Tend to be more social anyway and be interested in people. • Tend not to have the stereotypical “autistic-type” job- ie. accounting, banking, IT. • Better at modelling social interaction/norms and be more socially aware. • Less likely to score on the ADOS-2 • Tend to have more mainstream/socially-acceptable special interests (not obviously odd), ie. Animals, celebrities, art. • May have a previous PD or depression/anxiety diagnosis so other explanations are ignored.

Common Presentations • Problems at times of change or transition, ie. going to university,

Common Presentations • Problems at times of change or transition, ie. going to university, change of job or changes at work. • Lack of social network/social isolation leading to depression. • Pattern of problems at work or chronic underemployment despite high intellectual ability. • Relationship problems. • Severe social anxiety, especially in group settings. • “meltdowns” may appear like a panic attack, psychotic episode or catatonia. • Known to MH services, possible misdiagnosis or undiagnosed Autism. • Their son/daughter has been diagnosed with Autism and they think they have it too.

Support and Interventions • No “treatment” • Reducing social isolation – Peer Support Group,

Support and Interventions • No “treatment” • Reducing social isolation – Peer Support Group, ALAG (Aspergers London Area Group), Resources for Autism. • Treatment for co-morbid conditions • Psychological Therapy – Adapted CBT, PCP, Mentalisation, Mindfulness • Psycho-education- Post-diagnostic Group, ALAG • Vocational Support – SCOPE, Resources for Autism.

Benefits of a Diagnosis • • • Understanding for the patient but others too.

Benefits of a Diagnosis • • • Understanding for the patient but others too. Learning about the condition and how to cope. Gaining support from others with the same condition. Access to services that suit their needs. Access to certain benefits: such as DLA or PIPs; for students you could claim Disabled Students Allowance. • Help at work or getting into employment: employers have a responsibility to make “reasonable adjustments” • All patients are eligible for a community care assessment under The Care Act 2014 in order to access care and support (need to meet certain eligibility criteria)

Case Study D • D is a 31 year old Black British woman. •

Case Study D • D is a 31 year old Black British woman. • 2006 (19 yrs) ‘psychotic breakdown’, not admitted, HTT, then referred to CMHT. • 2006 -2012 under CMHT, Care co-ordinated, psychology Diagnosis: Body Dysmorphic Disorder • 2015 GP refers to PCP c/o anxiety and social isolation. PCP assess, refer back to CHAMRAS. • Seen by SPR for CHAMHRAS assessment Diagnosis: Simple Schizophrenia >referred to CMHT • Seen by CMHT Consultant > Autism? • 2016 Assessed by Autism service, diagnosis confirmed. • Care Act Assessment > 20 hrs support • Referred to Real Opportunities, employment support for ASD. • Supported to do voluntary work > apprenticeship > p/t job

Case Study N • N is a 42 year old White British man. •

Case Study N • N is a 42 year old White British man. • Under CMHT since 2004 (earliest RIO record), since 18 yrs? Following a “breakdown”, under CT 1 clinic • Diagnosis: Schizoid Personality Disorder with a background of anxiety and panic attacks Borderline Learning Disability (IQ 83 -92) • 2014 – stable, stepped down to PCL. • 2015 - PCL, seen once, stepped down to EPC • 2015 – seen by EPC practitioner, identifies Autistic traits, referred to Autism Service. • 2016/17 – assessed by Autism Service, diagnosis confirmed. • 2017 – seen by social worker, not eligible under the Care Act but supported to engage with Real Opportunities. • Engages with employment programme and is successful with application to Council job as p/t litter picker in a Royal Park. • OT liaises with employer and completed a reasonable adjustments assessment. • He continues to work and has had no contact with MH services to date.

City & Hackney Autism Service • Since February 2015, based at the Raybould Centre.

City & Hackney Autism Service • Since February 2015, based at the Raybould Centre. • Diagnostic service for adults (18+) in City & Hackney • Multidisciplinary team: Consultant Psychiatrist (3 sessions/1. 5 days) shared by Laura Checkley and Nicole Eady (LD) Operational Lead/Senior Practitioner (4 days) Leda Veloso (Social Worker/AMHP) Occupational Therapist (3 days) John Bradley Team Administrator (3 days) Alishba Emanuel

Diagnostic Service • We follow best practice and NICE guidance • We use 3

Diagnostic Service • We follow best practice and NICE guidance • We use 3 questionnaires: AQ 10; EQ 40; RQ 1 • We use the ADOS-2 (Autism Diagnostic Observational Schedule) NICE recommended • We provide assessment, advice/sign-posting, group work and post-diagnostic brief interventions. • Service users who have a learning disability should be referred to the Learning Disability Service. • We will not see those with an existing diagnosis of Autism/Aspergers but can offer advice to you, for those with high needs consider an Adult Social Care Referral.

Assessment Process • 2 -3 assessment appointments to make a diagnosis (including an ADOS-2)

Assessment Process • 2 -3 assessment appointments to make a diagnosis (including an ADOS-2) with two different clinicians. • 1 st appt: Psychiatric interview with Consultant (3 -DI or ADI-R) • 2 nd appt: Autism Diagnostic Observational Schedule (ADOS-2) with Leda or John. • 3 rd appt: feedback/outcome and advice, patients receive a new diagnosis resource pack (if diagnosis made) and diagnostic report. • Onward referral and signposting to other services: psychology, social services, voluntary sector, EPC, ALAG, Resources for Autism, DWP, TPS, etc… • Diagnosed patients are offered Post-diagnostic brief interventions, see next slide.

Post-Diagnostic Interventions Post-diagnostic interventions are offered to all patients who receive a diagnosis. •

Post-Diagnostic Interventions Post-diagnostic interventions are offered to all patients who receive a diagnosis. • Monthly Peer Support Group (up to 18 months post-diagnosis) • Post-Diagnostic Course: 4 consecutive sessions (including 1 for carer’s/partners/family) • OT assessment to inform Care Act Assessment. • Care Act Assessment (once SW recruited) • Work/Education Reasonable Adjustments session with OT, we will also liaise with the employer and visit the workplace if appropriate.

Referral Criteria • • 18 years + (no upper age limit) City & Hackney

Referral Criteria • • 18 years + (no upper age limit) City & Hackney GP as we are CCG funded. Patient consents to referral. No existing Autism/Asperger’s Diagnosis- but do contact us for advice if needed. • No existing LD Diagnosis (eligible for the LD Service) • Referrals can be sent to CHAMHRAS through the usual routes: elt-tr. chamhras@nhs. net • We are not a mental health service that can offer “reviews” and we do not case manage.

Contact the City and Hackney Autism Service Website: https: //www. elft. nhs. uk/service/341/Adult. Autism-Service-City-and-Hackney

Contact the City and Hackney Autism Service Website: https: //www. elft. nhs. uk/service/341/Adult. Autism-Service-City-and-Hackney Email: C&HAutism. Service@elft. nhs. uk Tel: 02085108176 Leda Veloso: 07939678592 (Monday-Thursday) Leda. Veloso@nhs. net Laura Checkley (Mondays) laura. checkley 1@nhs. net Nicole Eady (Wednesdays) nicole. eady 2@nhs. net

Resources • Ambitious about Autism: http: //www. ambitiousaboutautism. org. uk/page/index. cfm • National Autistic

Resources • Ambitious about Autism: http: //www. ambitiousaboutautism. org. uk/page/index. cfm • National Autistic Society : http: //www. autism. org. uk/ • NHS website: http: //www. nhs. uk/conditions/autistic-spectrumdisorder/Pages/Introduction. aspx • NICE: National Institute for Health and Clinical Excellence : Autism: recognition, referral, diagnosis and management of adults on the autism spectrum: http: //www. nice. org. uk/guidance/cg 142 • SCIE : Social Care Institute for Excellence: Improving access to social care for adults with autism: http: //www. scie. org. uk/publications/guide 43/ • Talk About Autism : http: //www. talkaboutautism. org. uk • Think Autism : Fulfilling and Rewarding Lives, the strategy for adults with autism in England; an update: https: //www. gov. uk/government/publications/think-autism-anupdate-to-the-government-adult-autism-strategy • Lai & Baron Cohen, 2015, Lancet Psychiatry “Identifying the lost generation of adults with autism spectrum conditions”

Thank you for listening. Any questions?

Thank you for listening. Any questions?

ASD diagnostic assessments at Hackney Ark Lizzie Hampson ASD Assistant Psychologist CAMHS Disability, Community

ASD diagnostic assessments at Hackney Ark Lizzie Hampson ASD Assistant Psychologist CAMHS Disability, Community CAMHS, Homerton

ASD Assessment Pathways There are currently four pathways for assessment: Under 5’s (held within

ASD Assessment Pathways There are currently four pathways for assessment: Under 5’s (held within Paediatrics at Hackney Ark, joined by the MDT) 2. 5 -18 with moderate-severe learning disability (CAMHS Disability Neurodevelopmental team) 3. 5 -13 without primary learning difficulties “higher functioning” (Social Communication Assessment Clinic) 4. Over 14 s without LD (Homerton Row, Specialist CAMHS) 1.

Autism Assessments at the Hackney Ark �All ASD assessments take place at the Hackney

Autism Assessments at the Hackney Ark �All ASD assessments take place at the Hackney Ark for children aged 2 -13 (up to 18 for children with additional moderate-severe learning disability) �Children over the age of 14 with no/mild learning disabilities are assessed at Homerton Row. �This simplifies referral processes, integrates service pathways, utilises resources to limit waiting times and increases specialism and quality.

Autism Assessments at the Hackney Ark �For children under 5, referrals to the Hackney

Autism Assessments at the Hackney Ark �For children under 5, referrals to the Hackney Ark for ASD assessments are to come through MARs (Multiagency referrals). �For “high functioning” children 5 -13, referrals can be made directly to the Social Communication Assessment Clinic (SCAC) at Hackney Ark. �For children 5 -13 with moderate-severe LD, if the child is already known to Hackney Ark referrals can be made directly to CAMHS Disability. If the child is not already known to Hackney Ark then referrals will need to go through MARS.

Under 5’s Diagnostic Pathways �All children aged 2 -4 inclusive (with or without a

Under 5’s Diagnostic Pathways �All children aged 2 -4 inclusive (with or without a learning disability) are referred to the paediatricians at Hackney Ark through MARs for neurodevelopmental assessment. �Children with suspected ASD are then referred on to the specialist Complex Communication Clinic (CCC). CCC provides a Multi Disciplinary Team (MDT) assessment.

Under 5’s Diagnostic Pathways Diagnostic assessment can then be completed following a number of

Under 5’s Diagnostic Pathways Diagnostic assessment can then be completed following a number of pathway options: Ø Complex Communication Needs Assessment Group (MDT) Ø Individualised assessment including ADOS, cognitive assessment and Theory of Mind Ø Clinic + (Complex Communication Clinic plus visit to education setting or home).

5 -19 with Learning Disability Assessment at Hackney Ark �This assessment is taken up

5 -19 with Learning Disability Assessment at Hackney Ark �This assessment is taken up by the Neurodevelopmental assessment Team based within CAMHS Disability which is a specialist tier 3 NHS service for children with disabilities and mental health/behavioural difficulties at Hackney Ark. �This team includes Clinical Psychologists, ASD Assistant Psychologists and a Speech and Language Therapist. �All assessments comply with NICE guidelines and use DSM-5 to reach a diagnosis.

5 -13 Higher Functioning Assessment at Hackney Ark The Social Communication Assessment Clinic (SCAC)

5 -13 Higher Functioning Assessment at Hackney Ark The Social Communication Assessment Clinic (SCAC) �Including: Specialist CAMHS clinicians (clinical Psychologist and Child and Adolescent Psychiatrist); speech and Language Therapist, Community Paediatrician, Educational Psychologist and Children’s Social Care Clinical psychologists �Assistant Psychologist co-ordinating the clinic and completing checklists for triage �EP completes school observation; disseminating findings to schools for local IEPs and into EHCPlan

�Individualised assessments may comprise ADOS and 3 DI-R (standardised assessment undertaken by specially trained

�Individualised assessments may comprise ADOS and 3 DI-R (standardised assessment undertaken by specially trained clinicians) alongside developmental history and observation in familiar settings. Specialist Speech and Language assessment and/or cognitive/Theory of Mind assessments agreed on a needs led basis �All assessments comply with NICE guidelines and use DSM-5 to reach a diagnosis.

Who can refer? �Any professional who knows the child and family can make referrals.

Who can refer? �Any professional who knows the child and family can make referrals. Consent from parents/carers must always be given. It is essential that it is made clear to parents that their child is being referred for an assessment of autism.

14+ (higher functioning) �All young people over 14 without LD are assessed at Specialist

14+ (higher functioning) �All young people over 14 without LD are assessed at Specialist CAMHS, ELFT, due to overlay with mental health needs. �All referrals go to ELFT (East London Foundation Trust).

NHS ASD post diagnostic offer Diagnosis from Neurodevelopmental team (Moderatesevere LD 5 -13) Next

NHS ASD post diagnostic offer Diagnosis from Neurodevelopmental team (Moderatesevere LD 5 -13) Next Steps group ASD Parents Coffee Morning (monthly drop in) Groups: Early bird plus Cygnet Diagnosis from SCAC (high functioning 5 -13) ASD parent workshops (HF) PEGASUS (ELFT) These post diagnostic groups are offered to all parents whose child receives a diagnosis. There is a wait list for some of these groups.

Intervention at CAMHS Disability � CAMHS Disability are able to offer children and families

Intervention at CAMHS Disability � CAMHS Disability are able to offer children and families individual intervention where further support is needed beyond post diagnostic groups. � CAMHS Disability (moderate-severe LD) can offer families longer term psychological intervention and behavioural intervention (Clinical Psychology), Psychotherapy (trauma, adjustment to diagnosis), Psychiatric assessment and follow up, Play Therapy and Family Therapy. � ASD Assistant Psychologists at CAMHS Disability are able to offer short term, focused behavioural intervention (including emotional regulation) 6 -8 sessions. They can also provide free training and consultation to schools around ASD.

Parent experience Kito (Dad) and James (7) Nasima (Mum) and Eva (4)

Parent experience Kito (Dad) and James (7) Nasima (Mum) and Eva (4)

Intervention at Specialist CAMHS �Specialist CAMHS offer assessment and support to “high functioning” children,

Intervention at Specialist CAMHS �Specialist CAMHS offer assessment and support to “high functioning” children, young people and their families with significant emotional, behavioural and mental health difficulties. �Members of the team include family therapists, nurses, psychiatrists, psychologists, psychotherapists and psychiatric social workers.

For more information please visit http: //www. cityandhackneycamhs. org. uk/

For more information please visit http: //www. cityandhackneycamhs. org. uk/