Parenting a child with Autism Spectrum Disorder (ASD) can be both a journey of discovery and deep resilience. In the UK, understanding the system: how to identify early signs, seek professional support, and navigate the pathways of diagnosis and education, can feel overwhelming. For me, personally, I felt more like a carer everyday rather than a parent, the learning curve was steep, and I felt lost down the rabbit hole of information, fragmented advice, so I collected all the information I can harness in my 1 year journey, and I wrote this concise roadmap for you based on my findings.  This guide is therefore aimed at simplifying that daunting process. Based on real experiences from other parents as well, it outlines every essential step with clarity and compassion, from spotting the first signs of ASD to securing an Education Health Care Plan (EHCP) for your child’s long-term support.

Before delving in, remember, Autism presents differently in every child. This humble guide was designed to support parents navigating the UK’s healthcare and education systems when seeking help for their child. Other countries might have completely different processes.

Spot the Signs

ASD signs vary from child to child. You may notice:

• Your child has missed developmental milestones (e.g. speaking)

• Your child is more interested in objects than people

• Your child does not respond to their name

• Your child is not interested in playing with you

• Your child turns away when you talk to them

• Your child loves repetitive behaviour

• Your child is very sensitive to noises, smells, tastes, or touches
  Early detection—ideally before the age of five—is crucial to ensuring your child receives timely support.

Contact Your GP

If you notice signs of ASD, book a face-to-face appointment with your GP. Go prepared and make sure to:

• Bring a list of your observations

• Provide clear examples

• Express your suspicion that your child may have ASD

• Ask for a referral to a developmental paediatrician

• Confirm which hospital you’re being referred to

• Request an audiology referral to check your child’s hearing
  Persist on getting referrals, as waiting lists can be long and some GPs may hesitate to refer younger children.

• If your child is non-verbal, ask your GP to refer you to a Speech and Language Therapy (SLT) team. If your child struggles with balance or motor skills, request a referral to Occupational Therapy (OT).

Speech Therapy

Speech therapists help children develop communication skills. You can expect:

• An explanation of communication types and stages

• An assessment of your child’s needs

• A tailored action plan

• Follow-up appointments to put the plan into action

• Workshops (face-to-face or online) teaching you how to support your child

• Printable materials like communication widgets, pictures, or schedules
  Early intervention, particularly before age five, is most effective. Therapists may also:

• Refer you to dietary workshops if your child struggles with food sensitivities (to help oral muscles develop for both eating and speech)

• Refer you to behavioural specialists if your child experiences frequent tantrums

• Contribute to your child’s Education Health Care Plan (EHCP)

Paediatrician Appointments

When you see the developmental paediatrician:

• Bring detailed notes about your child’s challenges and strengths

• Communicate your child’s needs clearly

• Bring food, toys, and books to help your child feel comfortable

• Expect possible blood or urine tests for conditions such as Fragile X or others causing developmental delays

• Paediatricians can confirm if your child has developmental needs and refer you for:

  • A Multi-Disciplinary Autism Assessment (MDA)

  • An Education Health Care Plan (EHCP)

  • Disability Living Allowance (DLA) information (available via www.gov.uk).

  • Tip: Always ask for reports via email and follow up regularly.

Autism Assessment (MDA)

The MDA typically involves:

• A specialist doctor

• A speech therapist

• An assessment coordinator

During the assessment:

• Your child will be observed through play

• You’ll answer questions about your child’s needs and strengths

• You should prepare your own list of questions

• Confirm the diagnosis (ASD or not)

• Ask for any further referrals (e.g. occupational therapy)

• Request the report via email and share it with your local authority and school

Education Health Care Plan (EHCP)

1. The EHCP production is a long process, it takes weeks and months
2. Proactively, and respectfully, keep on top of it, ask questions, and challenge decisions
3. Understand your rights, and when to engage with a lawyer if needed
4. Leverage your support system to help you with stress / frustration
5. Remember, you will hopefully do this only once, but it will change your child’s future forever

Helpful Resources

Trusted sources include:

• Local Authority Local Offer webpages

• The National Autistic Society (https://www.autism.org.uk)

• NHS autism resources and development milestones (https://www.nhs.uk/conditions/autism)

• Enhanced Children’s Centres: While your child is out of school, visit local special needs or family centres offering:

  • Play sessions (indoor, messy, or outdoor)

  • Workshops on speech, behaviour, toileting, or dental care

  • Sensory and social play activities

  • Trips to ASD-friendly venues like farms or trampoline parks

  • These centres benefit both child and parent: children socialise in a nursery-like environment, while parents gain knowledge and connect with others on similar journeys. Ask your SLT or check your Local Offer website for details.

Recommended Reading

• Autism: How to raise a happy autistic child: A highly recommended book by a UK journalist and mother of a child with ASD explains the UK process clearly and includes perspectives from both children and adults with autism.
• The Reason I Jump, written by an autistic boy, this is one of the most insightful books about the neurodiverse mind and explains many behaviour that might not be intuitive to parents and careers.
• 101 Tips for Parents of Children with AUTISM, great tips for parents and carers, I still refer to this book to get strategies for my children
• The Art of Parenting a Child with AUTISM AND ASPERGER’S
• Unmasked

Final Thoughts

• Be kind to yourself

• Be open-minded to learning

• Appreciate all support

• Be proactive and collaborative with professionals

• Be patient yet relentless in advocating for your child
  You will get there.