Your FASD Journey

Your FASD Journey

1. 1✓
   💭Noticing a concernNot started

   What happens

   • You notice your child finds some things much harder than other children of the same age, such as memory, attention, learning, behaviour or friendships.
   • You find out, or suspect, that your child was exposed to alcohol before birth.
   • You start to gather information. You do not need proof before asking for help.

   Questions to ask

   • What have I noticed, and since when?
   • Does the school or nursery see the same things?
   • What do I know about alcohol in the pregnancy, and where does that information come from?

   What you should leave with

   • Notes of what you have noticed, with two or three examples
   • Any records that mention alcohol in the pregnancy
   • Reports from school, nursery or other professionals

   This step is done

   Date Who we saw, or notes

   Helpful: Evidence checklist · Concerns guide · Records for adoptive, foster and kinship families

2. 2✓
   🩺Seeing the GPNot started

   What happens

   • You explain your concerns and what you know about alcohol exposure.
   • NICE QS204 says children with probable prenatal alcohol exposure and significant difficulties should be referred for assessment.
   • The GP refers your child to community paediatrics, a child development centre or a neurodevelopmental team.

   Questions to ask

   • Will you refer my child, and to which service?
   • Will you say in the referral that FASD should be considered?
   • Will you record the alcohol exposure in my child’s records?
   • How long is the wait, and who do I contact if I hear nothing?

   What you should leave with

   • A referral, and the name of the service it went to
   • The alcohol exposure recorded in your child’s GP records
   • An idea of how long the wait will be

   This step is done

   Date Who we saw, or notes

   Helpful: Guide for GPs · Template letter for your GP

3. 3✓
   👩‍⚕️Seeing the paediatricianNot started

   What happens

   • This may be a community paediatrician, a child development centre or a neurodevelopmental team.
   • A doctor takes a full history, examines your child and measures growth and head size.
   • They may check for other possible causes of your child’s difficulties. This can include tests such as hearing, vision or genetic tests.
   • They decide whether a full FASD assessment is needed and who will carry it out.

   Questions to ask

   • Will FASD be considered alongside other conditions?
   • Can your service do a full FASD assessment? If not, where will my child be referred?
   • Can you write to the school about my child’s needs while we wait?

   What you should leave with

   • A clear plan for the assessment, including who and when
   • A letter summarising the appointment
   • Advice on support while you wait

   This step is done

   Date Who we saw, or notes

   Helpful: Template letter for the paediatrician · While You Wait · No FASD Service Near You?

4. 4✓
   🧩The FASD assessmentNot started

   What happens

   • SIGN 156 says FASD should be assessed by a multidisciplinary team, such as a paediatrician, psychologist and speech and language therapist.
   • The team looks at 10 areas of brain function, including memory, attention, language, learning and daily living skills.
   • It can take several appointments. The school is usually asked for information too.

   Questions to ask

   • Which professionals will see my child?
   • How many appointments will there be, and how long will it take?
   • Will the school be asked for information?
   • Will I get a written report?

   What you should leave with

   • Dates for each part of the assessment
   • Information to pass to school
   • A date for the feedback appointment

   This step is done

   Date Who we saw, or notes

   Helpful: How FASD is assessed

5. 5✓
   📄The outcomeNot started

   What happens

   • The team meets you to explain what they found.
   • Under SIGN 156 there are three possible FASD outcomes: FASD with sentinel facial features, FASD without sentinel facial features, or at increased risk of FASD.
   • The assessment may also find a different explanation, or another condition alongside FASD.

   Questions to ask

   • What does the outcome mean for my child?
   • Which areas of brain function are affected, and which are strengths?
   • Will the outcome be coded in my child’s GP records?
   • If my child is at increased risk, when will they be seen again?

   What you should leave with

   • The outcome explained in plain words
   • A written report
   • The outcome recorded in your child’s health records
   • A review date, if your child is at increased risk

   This step is done

   Date Who we saw, or notes

   Helpful: Explaining FASD to your child

6. 6✓
   🗂️The management planNot started

   What happens

   • NICE QS204 Statement 5 says every child diagnosed with FASD should have an individualised management plan.
   • It should cover immediate and long-term needs and signpost to services, such as therapy, school support and help for the family.
   • It should be shared with you, the school and other professionals involved.

   Questions to ask

   • Who will coordinate my child’s care?
   • Who will get a copy of the plan?
   • What support will school be asked to give?
   • When will the plan be reviewed?

   What you should leave with

   • A written management plan
   • The name of a contact person
   • A review date

   This step is done

   Date Who we saw, or notes

   Helpful: Personalised support plan · School Advocacy Toolkit · EHC needs assessment letter

7. 7✓
   🌱Ongoing support and reviewNot started

   What happens

   • Needs change as your child grows. Moving school, puberty and becoming an adult are times when extra support may be needed.
   • Keep the plan up to date and share it with anyone new who works with your child.
   • Support should be based on your child’s needs at every stage.

   Questions to ask

   • Is the plan still working?
   • Who needs to know about my child’s FASD at the next stage?
   • What changes at 16 and 18, and who will help with that move?

   What you should leave with

   • An updated plan after each review
   • A plan for the next big change, such as starting secondary school

   This step is done

   Date Who we saw, or notes

   Helpful: Age-based support pathways · Meltdowns and Big Feelings

If You Get Stuck