Just diagnosed: your first 12 weeks after an autism diagnosis

How might I feel after my child's diagnosis?

There is no right way to feel. Parents describe relief, sadness, worry, grief for the future they had pictured, or all of these at once, and feelings can change from day to day. Your child is the same child they were before the appointment.

A review of 11 UK studies found parents had emotional, informational and relational needs around diagnosis, and that fathers seemed to find it harder than mothers, possibly because they felt left out of the assessment (Legg and Tickle, 2019). In a UK survey of 1,047 parents, published in 2016, support after diagnosis was "deemed unsatisfactory" (Crane and colleagues, 2016). If you feel you have been left to get on with it, you are not imagining it, and you can ask for more.

What should happen after a diagnosis?

NICE says the team should explain the findings in person, give you a written report, share it with your GP and offer a follow-up appointment within 6 weeks. It should also give you information about support in your area (NICE CG128). Help after a diagnosis is often called post-diagnostic support.

NICE's guideline on supporting autistic children, CG170, and its quality standard QS51 add that:

• every autistic child should have a key worker (or case manager) to co-ordinate their care and support
• your child should have a personalised plan, made in partnership with you and the autism team
• the team should discuss with you, and write down, the options for age-appropriate support that does not involve medicine
• families should be told about their right to short breaks and to an assessment of their own needs
• medication should not be prescribed for the core features of autism.

If any of this is missing, ask for it.

Reading the report

Read the report when you have some quiet time. The NHS says it should say whether your child is autistic, what they are good at, what they might need help with and whether any other conditions were found. NICE says it should explain the reasons for the team's conclusions.

The report may use the medical term autism spectrum disorder (ASD). It may not give a "level" (1, 2 or 3): levels come from the American DSM-5 manual. ICD-11, the classification NHS England's national framework uses, has no levels. Instead it records whether a person also has an intellectual disability and how much they can use language (Greaves-Lord and colleagues, 2022). A report without a level is not incomplete.

Questions to ask at the follow-up

• What does the report mean for my child, day to day?
• Who is our key worker or main contact, and how do we reach them?
• Will there be a personalised plan, and who will write it?
• What support, parent courses or groups are there locally, and do we need a referral?
• Who do we contact if things get harder?

What should I do in the first 12 weeks?

You do not have to do everything at once. This plan is our suggestion, not an official NHS checklist, so move things around to suit your family.

How do I get support at nursery or school?

Share the report with your child's nursery or school and ask to meet the SENCO. Your child does not need a diagnosis to get SEN support (IPSEA), but the report can help staff understand what your child finds hard and what helps.

In England, the SEND Code of Practice says schools should "take seriously any concerns raised by a parent". When a child gets SEN support, parents "must be formally notified", and the support should be agreed with you, with its expected impact and "a clear date for review". This cycle of assess, plan, do and review is called the graduated approach, and it runs in nurseries too. Ask for the plan in writing.

Should we ask for an EHC needs assessment?

An EHC needs assessment is the council's detailed look at whether your child needs an EHCP (Education, Health and Care Plan), a legal document that sets out their needs and the support they must get. You can ask the council yourself (Children and Families Act 2014, section 36). You do not need a diagnosis: the test is whether your child has or may have special educational needs and may need a plan. The Code suggests considering a request if your child has not made expected progress despite "relevant and purposeful action" at nursery or school.

The council must decide within 6 weeks whether to assess (regulation 5), and the final plan is due within 20 weeks of your request (regulation 13). In 2025, 46.1% of new plans in England were issued within 20 weeks (Department for Education). Our guides explain SEN support and EHCPs and how to request an assessment.

Proposed SEND reforms are not yet law, and the Department for Education says "no changes to the support given by EHCPs will begin before September 2030" (Department for Education). See SEND reforms 2026.

Which parent courses and groups can help?

Parent courses can help you learn about autism and meet other families. Ages, entry rules and waiting lists differ between areas, and some ask for a diagnosis, so check locally.

• EarlyBird and EarlyBird Plus. The National Autistic Society's EarlyBird programme is for parents of autistic children under six, and EarlyBird Plus is for children aged five to ten. Local licensed teams run them, and you can search for one in the charity's online directory (National Autistic Society). In Lambeth, for example, EarlyBird runs over 12 weeks, with 8 group sessions and 4 home visits (Lambeth Council).
• Cygnet. Barnardo's describes Cygnet as "a seven week support programme" for parents and carers of autistic children and young people aged 5 to 18 (Barnardo's). The booking page we found was for Wales, so check whether it runs near you.
• Local workshops. Your autism team, council or parent carer forum may run its own sessions.

In England, every council must publish a Local Offer: information about services for children and young people with special educational needs or disabilities, including education, health, care and travel to school (Children and Families Act 2014, section 30). Search online for your council's name and "Local Offer".

A parent carer forum is a local group of parents and carers of disabled children who work with the council, education and health services (National Network of Parent Carer Forums).

What money and practical help can we get?

A diagnosis does not bring money automatically, but now is a good time to check what you can claim.

• Disability Living Allowance. DLA for children under 16 depends on how much more looking after or help getting about your child needs than other children of the same age (GOV.UK). The National Autistic Society notes that a diagnosis "will not automatically lead to an award" (National Autistic Society). In 2026/27, DLA for children is worth £30.30 to £194.60 a week, tax-free (GOV.UK). Call the DLA helpline on 0800 121 4600 for a form. Contact has tips on filling it in, and our DLA guide explains more.
• Carer's Allowance. If your child gets the middle or highest DLA care rate and you care for them for at least 35 hours a week, you may be able to claim Carer's Allowance, depending on your earnings (GOV.UK).
• Help for you from the council. In England, the council must assess a parent carer's own needs for support if you ask for a parent carer needs assessment (Children Act 1989, section 17ZD). Councils must also publish what short breaks they offer and who can get them (Breaks for Carers of Disabled Children Regulations 2011).

Our guide to money and practical help covers other benefits and grants.

How do we tell our child, family and friends?

Small studies suggest that learning about autism early, in a positive way, helps: in a study of 78 autistic university students, those who learned they were autistic younger felt happier about their lives (Oredipe and colleagues, 2023). The National Autistic Society suggests giving small amounts of information over time, in words your child understands. Our guide to telling your child they are autistic has example words for each age.

With family and friends, tell people when you are ready, starting with those who spend the most time with your child. The National Autistic Society says telling others can bring more understanding and support, but that some people react with misconceptions or play a diagnosis down. It helps to explain what autism means for your child in particular: what they love, what is hard and what helps. A one-page profile puts this on one sheet for grandparents, childminders and clubs. As your child grows, let them have a say in who is told. For brothers and sisters, see explaining autism to siblings.

Do we need to start therapies straight away?

No. There is no need to rush, and some treatments sold to parents should not be used at all. Keep doing what already works for your child. The NHS advises keeping routines, warning your child about changes, and not trying "to change how they behave, unless it's harmful to them or others" (NHS).

NICE recommends considering support for communication that "includes play-based strategies with parents, carers and teachers to increase joint attention, engagement and reciprocal communication" (NICE CG170). Ask your autism team what is offered locally.

NICE says not to use exclusion diets for the core features of autism, or secretin, chelation or hyperbaric oxygen therapy for autism at all (NICE CG170). In September 2026 the Advertising Standards Authority ruled against adverts from three clinics selling stem cell "treatments" for autism, noting that stem cell transplants "were not a recognised treatment in the UK for autism, including in children" (ASA). One advert had claimed a "94% Success Rate" (ASA). Be wary of anything that promises recovery, quotes success rates or asks for large payments up front, and talk to your GP or autism team before paying. Our guide to autism therapies in the UK explains more.

How do I look after myself, and where can I get help?

Your wellbeing matters too. NICE says families should be offered an assessment of their own needs, including emotional and practical support (NICE CG170).

• The National Autistic Society runs a Parent to Parent emotional support service with trained parent volunteers (National Autistic Society).
• Contact offers 45-minute Listening Ear phone appointments with parent advisers who are parents of disabled children themselves (Contact), and a free helpline on 0808 808 3555.
• Autism Central is an NHS-commissioned peer education programme in England for families of autistic people, with peer coaching and free online events (Autism Central).
• Your parent carer forum, local SENDIASS and IPSEA can help with services and school, and Carers UK supports unpaid carers.
• Our guide to looking after yourself covers stress, burnout and short breaks.