Family Toolkit
Support at Every Age
What to think about at each stage, from the early years to adulthood.
FASD Compass · fasdcompass.co.uk/age-pathways/
FASD is lifelong, but needs change as children grow. Many people with FASD develop unevenly. National FASD suggests a rule of thumb of pitching supervision and expectations at around half their age in social and emotional areas (National FASD). Choose your child’s age group below.
Ages 0 to 5
The early years are a time to notice, get help early and build routines that will help for years to come.
What you may notice
Feeding or sleep difficulties, being very unsettled, sensitivity to noise or touch, delays in speech or movement, and high activity levels. Every child is different and these signs can have many causes.
Getting help
Talk to your health visitor or GP. Ask for a referral to community paediatrics if you are worried about development. Speech and language therapy and occupational therapy can help early. See Before You See the GP.
Nursery and early years
Early years settings can give SEN support without a diagnosis. In England, two-year-olds who get Disability Living Allowance, have an EHC plan or have left care through adoption or special guardianship can get 15 hours of free childcare (GOV.UK).
Starting school
Ask for a transition plan. Visit the school several times, make a photo book of the classroom and staff, and share a pupil profile before your child starts.
Routines at home
Build simple, predictable routines with pictures for mornings, meals and bedtime. These habits help as your child grows. See Everyday Solutions.
Money and support
Disability Living Allowance is based on care and mobility needs, not diagnosis. A parent carer needs assessment can help you get support. See While You Wait.
Ages 6 to 11
In primary school, the gap between what is expected and what your child can manage may grow. This is often when difficulties become more obvious.
School support
Ask for SEN support and use the School Advocacy Toolkit. If support is not enough, you can ask for an EHC needs assessment in England. Children often hold things together at school and let go at home.
Friendships
Children may be friendly and eager to please but struggle with turn-taking, rules of games and reading others. Supervised, structured play helps more than leaving them to it.
Supervision
Many children need more supervision than others their age, for example near roads, in shops and with other children. This is support, not babying.
Talking about bodies and puberty
Start talking about bodies, privacy and puberty early, before changes begin. Use correct names, simple words and pictures, and repeat often. Contact has advice for parents.
First steps online
Set up parental controls and keep devices in shared spaces. Teach simple rules, such as never sharing personal details. Internet Matters has advice for children with SEND.
Moving to secondary school
Start planning in Year 5 or early Year 6. Ask for extra visits, a named key adult, a map, a visual timetable and a plan for break and lunch.
Ages 12 to 17
The teenage years can be hard. Expectations rise, there are more teachers and more freedom, and young people want to fit in. Supervision is still needed, even if your teenager does not want it.
Secondary school
Many teachers, a changing timetable and long unstructured times can be overwhelming. Ask for one key adult, a quiet space and help with organisation. Ask about access arrangements for exams.
Vulnerability
Young people with FASD can be very trusting, easily led and eager to please. This can make them vulnerable to peer pressure, bullying and exploitation, including online. Agree safety plans and safe adults, and ask school to include safeguarding in their support.
Online safety
Talk often about what they do online. Teach that anything shared can stay online for ever and that people may not be who they say. See the Internet Matters SEND hub.
Puberty and relationships
Give clear, concrete and repeated teaching about bodies, consent, private and public behaviour and healthy relationships. Check understanding, as knowing a rule is not the same as using it.
Mental health
Anxiety and low mood are common in teenagers with FASD. Talk to your GP if you notice changes in mood, sleep, eating or self-harm. In an emergency call 999. For urgent advice call NHS 111.
Planning for adulthood
In England, EHC plan reviews must include preparing for adulthood from Year 9. NHS guidance says planning to move to adult health services should start from age 11 to 12, and no later than 14 (NHS England). Young people can apply for Personal Independence Payment from 16.
18 and Over
Adulthood brings new services, new rights and new risks. Many young adults with FASD need ongoing support, sometimes called an external brain: a trusted person who helps with planning, money and decisions.
Adult social care
Adult social care uses the Care Act 2014 from age 18. Ask your council for a needs assessment, ideally before your young person turns 18. Carers can ask for their own carer’s assessment too. Ask your council for its preparing for adulthood or transitions team.
Education and training
An EHC plan can continue up to age 25 if your young person stays in education or training. College support services can help with learning and organisation.
Work
Access to Work can pay for practical support at work. A diagnosis is not needed to apply. Clear routines, written instructions and a named supervisor often help.
Independent living
Living independently may take longer and need more support. Practise skills such as cooking, travel and money in real life, one at a time. Supported living or a phased move can help.
Money and benefits
Help with budgeting is often needed for years. Consider simple systems such as separate accounts for bills and spending. Personal Independence Payment is based on needs, not diagnosis.
Health and diagnosis
Make sure your GP knows about FASD or suspected FASD. Adults can be assessed for FASD. The National FASD Clinic sees adults as well as children. See No FASD Service Near You?
📚 Based on National FASD guidance, UK government guidance and FASD-informed practice. Services differ across England, Scotland, Wales and Northern Ireland. The National FASD helpline (0208 458 5951) can advise.
Sources: National FASD: nationalfasd.org.uk · GOV.UK childcare: gov.uk/help-with-childcare-costs/free-childcare-2-year-olds-extra-support · NHS England transition: england.nhs.uk · Access to Work: gov.uk/access-to-work · Internet Matters: internetmatters.org/connecting-safely-online
Last reviewed: November 2026 by Dr Inyang Takon, Consultant Neurodevelopmental Paediatrician. For information only. This page does not replace advice from your own doctor.