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Autism Support Record
Diagnostic Journey
and Strategies
for Living with Autism
This plan will help you keep track of your diagnosis journey and strategies for living
with an autism spectrum disorder. It can be shown to GPs clinicians, education
providers, family, friends and professionals. It will tell them all the important
information about you to guide your support in varying settings as well as in
emergency situations.
This plan is for : _________________________________
Other people involved in making this plan:
1) _____________________________
2) _____________________________
3) _____________________________
PHOTO
About this Support Record
Contents
Personal information
Next of kin
Birth details
Family and friends
Milestones
Significant medical history
Personal history
My pathway to diagnosis
My diagnosis
Autism specific techniques
Professionals involved with me
I need support with...
Triggers and things that help me
Likes and dislikes
Current support
Strategies and approaches
What next
Useful contacts
Notes
Autistic Spectrum Disorders
Autism is a life-long condition which affects how a person communicates and relates to other people. It affects how a person perceives and makes sense of the world around them. 75% of people with autism will have additional learning disabilities. Autism affects approximately one in a hundred people and some 700,000 people in the UK have the condition. Autism affects people of all intellectual abilities, social classes, religions and ethnicity. Children with autism grow up to be adults with autism. The definitive cause of autism is unknown.
Name
Date of birth
Address
Telephone №
Official diagnosis
NHS number
GP name/surgery
Personal Information
Next of kin
Name:
Relationship:
Address:
Telephone №:
Mobile:
Work №:
Email:
Emergency contact (if different from NoK)
Relationship:
Address:
Telephone №:
Mobile №:
Work №:
Email:
Social worker
Name:
Telephone №:
Email:
Next of kin and emergency contact
Gestation time
Was the pregnancy full term?
Weight
Delivery
E.g. natural, caesarean etc.
Details of birth
Any complications during pregnancy or labour. Any other details.
Baby’s health after birth
Birth details
My family
Mother:
Father:
Sibling:
Sibling:
Other people in the family with autism Details of the relation, if they were diagnosed with any issues at birth, how autism effects them etc.
Other important family and friends
My family and friends
All children develop at different rates, but as a general guide, children should roughly follow the following milestones.
Please fill in the dates you observed these behaviours.
Developmental check list
24-36 months
Date observed
Comments
MOVEMENT
Climbs well (24-30 mos.)
Walks down stairs alone, placing
both feet on each step (26-28
mos.)
Walks up stairs alternating feet
with support (24-30 mos.)
Swings leg to kick ball (24-30
mos.)
Runs easily (24-26 mos.)
Pedals tricycle (30-36 mos.)
Bends over easily without falling
(24-30 mos.)
HAND AND FINGER SKILLS
Makes vertical, horizontal, circu-lar strokes with pencil or crayon (30-36 mos.)
Turns book pages one at a time
(24-30 mos.)
Builds a tower of more than 6
blocks (24-30 mos.)
Holds a pencil in writing position
(30-36 mos.)
Screws and unscrews jar lids,
nuts, and bolts (24-30 mos.)
Turns rotating handles (24-30
mos.)
My pathway to diagnosis
Milestones
Developmental check list
24-36 months
Date
observed Comments
LANGUAGE
Recognises and identifies al-most all common objects and pictures (26-32 mos.)
Understands most sentences (24-40 mos.)
Understands physical relation-ships (on, in, under) (30-36 mos.)
Can say name, age, and sex (30-36 mos.)
Uses pronouns (I, you, me, we, they) (24-30 mos.)
Strangers can understand most of words (30-36 mos.)
COGNITIVE
Makes mechanical toys work (30-36 mos.)
Matches an object in hand or room to a picture in a book (24-30 mos.)
Plays make-believe with dolls, animals, and people (24-36 mos.)
Completes puzzles with 3 or 4 pieces (24-36 mos.)
Understands concept of “two” (26-32 mos.)
SOCIAL/EMOTIONAL
Separates easily from parents (by 36 mos.)
Expresses a wide range of emo-tions (24-36 mos.)
Objects to major changes in rou-tine (24-36 mos.)
My pathway to diagnosis
Milestones
General health and medical history
Allergies and alerts
Current medication
My pathway to diagnosis
Significant medical history
Dietary needs
Medical plans or support needs when having medical appointments
My pathway to diagnosis
Significant medical history
My pathway to diagnosis
Personal History
Notable historical events and information
Parents’ wishes, concerns and information
First suspected something
Date: Observations:
GP involvement
When did you first visit the GP to discuss your concerns?
Date:
GP name/surgery:
Outcome:
My pathway to diagnosis
Nursery and school involvement
Did the school have observations about your child? Did they instigate anything for you?
Date: Name: Observations:
Paediatric involvement
Did the paediatrician become involved? What did she or he say? Date: Name: Observations: Date: Name: Observations:
My pathway to diagnosis
CAMHS involvement
When did CAMHS become involved? What did they do or provide?
Date: Name: Observations:
Record of correspondence
Summary of important times, assessments, conclusions
My pathway to diagnosis
Official medical diagnosis
Date diagnosis given
How my diagnosis affects me
Brief detail about how the condition affects your child. Include details about impairments in social communication, social interaction and restricted and repetitive activities, sensory issues, and any challenging behaviours.
My diagnosis Sometimes people may go through the diagnosis pathway but may not come away
with a diagnosis, however, there is still a need for techniques and strategies. You
can find these on the Strategies for Living page.
Professionals involved with the assessment and diagnosis process
Brief details about who was involved in the assessment and diagnosis. What was their role?
My diagnosis
Some useful evidenced based techniques for managing Autism Spectrum Disorders
Antecedent Control – Identifying and managing the triggers and warning signs to a challenging behaviour. Understanding and managing these antecedents may help to reduce or prevent specific behaviours. Some useful techniques to do this are using verbal prompts, distracting the person, and making environ-mental changes.
Behavioural Interventions - These are designed to reduce ‘problem’ behaviour and teach functional alternative behaviours or skills.
Modelling & Natural Teaching Strategies – Person-centred interactions which teach functional skills, for example, providing a stimulating environment, model-ling how to behave, encouraging conversation and providing choices.
Schedules – These can be pictorial aids that communicate a series of activities or steps required to complete an activity or function e.g. self-care, transitioning between areas, finishing tasks, eating etc.
Self-Management Techniques- promoting independence by teaching individu-als to regulate their own behaviour, e.g. using reinforces, visual prompts, check-lists, or identifying a calm area such as using a beanbag or calming mat.
Story Based Interventions & Scripting –Explaining situations in a written and pictorial story, including the rules for someone to understand where they struggle and what is expected of them. These should also include giving someone set verbal responses to social situations or repetitive questions, social skills and rules which help the service user manage social interactions.
Augmentative and Alternative Communication Approaches - The use of visual aids and/or technology to support a person to understand and use the process of communication (i.e. symbols, pictures, objects of reference, apps on tablets).
Cognitive Behavioural Intervention - Using talking therapy to help people manage their problems by changing the way they think and behave.
Strategies for living
These strategies are evidence based and are useful for people who are awaiting
diagnosis, have received a diagnosis or have failed to receive a diagnosis but still
require support.
Some useful evidenced based techniques for managing Autism Spectrum Disorders
Sexuality and Relationship Interventions - Using accessible information to help a person understand what they want from a friend or partner including inti-macy issues. May include physical, social and emotional aspects.
Exercise - Physical activities and exercise to reduce arousal levels, address sensory issues and motor problems.
Desensitisation Interventions - To help a service user face fears or manage sensory sensitivities (i.e. graded exposure to fingernail cutting including hand massage and using a file prior to introducing a nail clipper)
Intensive Interaction - Communication to people who are still at an early stage of communication or those with complex communication issues, using mirroring and ‘tuning in’ to expressions and sounds.
Speech and Language Therapy - Following advice from speech and language therapist.
Massage and Touch Therapy - This approach uses varied touch and massage to address sensory issues, motor problems and touch receptivity. May include the use of a heavy blanket.
Technology Based Interventions- Use of computers, tablets and smartphones to support individuals with social interaction, social communication, scheduling and sensory issues.
For more information please see: www.nationalautismcenter.org/national-standards-project/phase-2
Strategies for living
These strategies are evidence based and are useful for people who are awaiting
diagnosis, have received a diagnosis or have failed to receive a diagnosis but still
require support.
Social Worker
Name:
Telephone №:
Mobile №:
Work №:
Email:
Other professionals involved
Name:
Profession:
Telephone №:
Email:
Name:
Profession:
Telephone №:
Email:
Name:
Profession:
Telephone №:
Email:
Name:
Profession:
Telephone №:
Email:
Strategies for living with ASD Professionals involved with me
Strategies for living with ASD I need support with...
Communication
Things that help me
Eating and drinking
Things that help me
Strategies for living with ASD I need support with...
Mobility difficulties
Things that help me
Behaviours of concern
Things that help me
Strategies for living with ASD Triggers and things that help me
Signs of anxiety
Known triggers
Things that help me
Strategies for living with ASD My likes and dislikes
Things I like
Things I dislike
Names of support providers Please give details of services that provide you with support. E.g. care providers, education, respite, parent or guardian support
Hours of support provided E.g. length of School day, time provider support is given or parental support is given
Strategies for living with ASD Current support
Additional support needs What additional support do your require?
Any other information regarding support
Strategies for living with ASD Current support
Key points What are the key points from any care plans, educational support plan, professional advice and/or details of strategies and approaches you have in place for the day-to day-support of your child?
Strategies for living with ASD Strategies and approaches
Other support plans in place
E.g. Person-centred plans, communication passports, health action plan.
Strategies for living with ASD Strategies and approaches - other support plans
What next Benefits, financial support and information. For further information please visit the autism resource page of our website
http://www.spectrumasd.org/resources-downloads/
Spectrum’s Pearl Centre Spectrum’s Pearl Centre is a great source of information and support, whether you are on the pathway to a diagnosis, getting a diagnosis or already have one. The Pearl Centre can help you with questions about local services, support, information about the condition, education, other services and organisation and more. The Pearl Centre also offers free open sessions which give you the opportunity to put your questions to a clinical psychologist and a behavioural specialist. This might be questions relevant to your situation, learning about the condition or how to manage a certain milestone like the transition to school. The Pearl Centre is contactable in many ways (please see the ‘useful contacts’page)
DLA (Disability Living Allowance)
You may be entitled to receive disability living allowance, which can help with your child's specific needs. To find out if you are eligible please visit - 0345 712 3456 https://www.gov.uk/browse/benefits/disability
Personal budgets Personal budgets are used to pay for services for your child which will help achieve outcomes agreed in the child or young person’s plan. 0300 1234 101 http://goo.gl/yZ3VRh
Direct payments Direct payments are used similarly to a personal budget but you get money to use and decide who you pay to offer support or services. 01872 323059 http://goo.gl/LQbWoM
Special schools and other schools in the county Here you will find a list of specific special schools along with an a-z of all other schools in the county.
http://goo.gl/5TypVq
Social workers and assessments A social worker can be very helpful in accessing services and support. You will need to contact the access team who will then ask you some questions to see how they can best help you and put you in contact with the correct people. You may need to have a needs assessment. 0300 1234 131 http://www.cornwall.gov.uk/health-and-social-care/adult-social-care/needs-assessment/
Spectrum’s Pearl Centre
An ASD resource and information centre for autism and related issues. 01872 278378 [email protected] Skype: search via skype for the username pearl.centre The Pearl Centre 1st Floor, Godolphin House, 7/8 Cathedral Lane, Truro, Cornwall, TR1 2QS http://www.spectrumasd.org/what-spectrum-does/pearl-centre/
Early Help Hub
Early Help is available to children and young people of all ages from pre-birth up to the age of 18, and up to the age of 25 where young people have special edu-cational needs or disability. 01872 322277 http://www.cornwall.gov.uk/earlyhelphub
Cornwall Carers’ Service
Offering support, information and guidance to informal and unpaid carers across Cornwall. 01872 266383 http://www.cornwallcarers.org.uk/
Family Information Service
Cornwall & Isles of Scilly family information service 01872 323 535 https://goo.gl/MJxSCd
Parent Carer Council
Information, support and guidance 07973 763332 www.parentcarercouncilcornwall.org.uk
NAS
The National Autistic Society helpline 0808 800 4104
Healthwatch Cornwall
Healthwatch Cornwall is a service that listens to your experiences with health and social care, good or bad, and can help bring about change by highlighting these issue with relevant bodies. 0800 0381 281 http://www.healthwatchcornwall.co.uk/have-your-say/
Useful contacts
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Notes
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Notes
Tel: 01872 278378
E-mail: [email protected]
Reg. Charity № 1026475
Devon & Cornwall Autistic Community Trust
trading as Spectrum
A specialist
provider of
autism services
Spectrum provides residential care for both adults and
children, education and domiciliary care services for
people with autistic spectrum disorders, similar
conditions and challenging behaviours.
Spectrum’s Pearl Centre is an autism resource and
information centre where individuals on the spectrum,
families, and professionals can gain more information
about the condition or about issues which are relevant
to their situation.
This booklet can be downloaded here
www.spectrumasd.org/resources-downloads/
autism-support-record/
