A Parent's Guide to Neurodiversity: Essential Support After Diagnosis

Receiving a neurodivergent diagnosis for a child can evoke a complex tapestry of emotions. Parents may experience relief at finally having an explanation for their child’s unique ways of experiencing the world, alongside feelings of confusion, worry about the future, and an overwhelming sense of love and determination.

It is important to acknowledge that these feelings, and many others, are a natural and valid part of this new chapter. Many parents find that a diagnosis, while initially daunting, serves as a crucial key, unlocking a deeper understanding of their child and paving the way to access appropriate support and resources.

This guide introduces the concept of neurodiversity, which recognizes that variations in brain function are a natural and valuable part of human experience, much like other forms of diversity such as race or gender. A neurodivergent diagnosis signifies that a child’s brain processes information and interacts with the world in a way that is different from what is considered typical, but this difference is not inherently “wrong” or “deficient”.

“Adopting a neurodiversity perspective from the outset can foster a more positive and empowering approach, moving away from a purely medical or deficit-based view towards one of acceptance and understanding. This shift can significantly influence a parent’s entire journey and, critically, shape their child’s self-perception, countering potential societal stigma and fostering a supportive environment for their development.”

Understanding Common Neurodivergent Profiles

This section provides parent-friendly overviews of several common neurodivergent profiles. It is essential to remember that each child is an individual, and the way their neurodivergence presents will be unique. Furthermore, it is not uncommon for a child to have characteristics of more than one neurodivergent profile, a concept known as co-occurrence.

Autism Spectrum (including Pathological Demand Avoidance - PDA)

Autism: What it Means for Your Child

Autism is a lifelong neurodevelopmental difference that affects how individuals communicate, interact with others, and experience the world around them. The NHS and the National Autistic Society (NAS) highlight that autistic individuals may show differences in:

Social communication and interaction
Sensory processing
Repetitive patterns of behaviour
Intense, focused interests

It is termed a “spectrum” because autism affects each person differently; there is no single way to be autistic, and each individual will have a unique combination of characteristics and support needs.

In daily life, these differences might mean an autistic child:

Finds bright lights or loud noises overwhelming and stressful
Experiences anxiety in unfamiliar social situations
Takes longer to process and understand information
Engages in repetitive behaviours or thoughts, which can be calming or a way to express joy

Important to understand:

Autism is not an illness or disease to be cured
It is not caused by parenting styles or vaccines; evidence suggests a strong genetic component
Autism does not define a child’s entire being or predetermine their future limitations
It represents a different way of processing the world, not a deficit

Pathological Demand Avoidance (PDA) as an Autism Profile

Pathological Demand Avoidance (PDA) is widely understood by many clinicians and researchers to be a profile within the autism spectrum. While there is ongoing discussion about its precise classification, its identification can be crucial for tailoring support.

The core characteristic of PDA is an extreme and pervasive avoidance of everyday demands and expectations, even those the individual may want or need to do. This avoidance is not typically rooted in defiance but is understood to be driven by an intense anxiety-based need to maintain control and autonomy.

Children with a PDA profile often:

Employ social strategies to avoid demands (distraction, excuses, procrastination)
Use role-play and fantasy
Experience excessive mood swings and impulsivity
May appear sociable but have underlying differences in social understanding

“One of the hardest things I find… is that sometimes they appear so normal that others think there isn’t a problem—but I know I can never relax—others don’t see the groundwork and the thinking I have to do to make the simplest thing a success; it is completely exhausting”

A critical aspect for parents to understand is why traditional parenting and behaviour management strategies—such as firm boundaries, rewards, and consequences—are often ineffective and can even be counterproductive for children with a PDA profile.

Helpful approaches for PDA often focus on reducing anxiety and increasing the child’s sense of control. The P.A.N.D.A.S. mnemonic, developed by the PDA Society, offers a framework:

Pick battles
Anxiety management
Negotiation and collaboration
Disguise and manage demands
Adaptation (or Self-care/Support)

Attention Deficit Hyperactivity Disorder (ADHD)

ADHD: What it Means for Your Child

Attention Deficit Hyperactivity Disorder (ADHD) is a neurodevelopmental condition characterized by persistent patterns of inattention and/or hyperactivity-impulsivity that interfere with functioning or development. The NHS notes that ADHD can affect concentration and the ability to sit still.

It is important to recognise that ADHD is thought to be identified less often in girls, who may present with predominantly inattentive symptoms that can be harder to spot in a busy classroom.

In daily life, a child with ADHD might:

Be easily distracted
Find it hard to listen to or follow instructions
Forget everyday tasks
Exhibit high energy levels
Fidget constantly
Talk excessively
Feel restless
Struggle with waiting their turn or interrupting others

Common myths about ADHD:

It is NOT simply “naughty” behaviour
It is NOT a result of “bad parenting” or excessive sugar intake
Medication, if used, is a treatment to manage symptoms, not a “cure”
When used properly, ADHD medication is not typically addictive
ADHD is a real neurodevelopmental difference affecting brain function

Dyslexia

Dyslexia: What it Means for Your Child

Dyslexia is a common specific learning difficulty that primarily causes problems with accurate and fluent reading, writing, and spelling. Crucially, dyslexia is not related to a person’s overall intelligence.

In everyday life, a child with dyslexia may:

Read and write very slowly
Confuse the order of letters in words (e.g., “was” for “saw”)
Be confused by letters that look similar (e.g., “b” and “d”)
Have poor or inconsistent spelling
Find it difficult to understand written information even if they comprehend it verbally
Struggle with carrying out a sequence of directions
Have problems with planning and organisation

Common myths about dyslexia include that it is caused by visual perception problems or is a sign of low intelligence; these are incorrect. Dyslexia is also not something that can be “cured” or that children will simply “outgrow”. It is a lifelong difference in how the brain processes language, particularly phonological information (the sounds within words).

Understanding Co-occurring Conditions

Neurodivergent individuals often have traits of multiple profiles; for instance, a child might have autism and ADHD, or dyslexia with autism/ADHD. Significant overlap exists; research estimates 22-83% of autistic children may have ADHD, and 30-65% of children with ADHD show autistic traits. This shows complex, multifaceted experiences requiring combined support.

Focusing on Strengths Alongside Challenges

While diagnoses highlight areas of challenge, it is vital to remember that every neurodivergent child possesses unique strengths and talents.

Autistic children often demonstrate:

Intense focus on areas of interest
Strong pattern recognition
Attention to detail
Loyalty
A unique, honest perspective

Children with PDA profiles can be:

Highly creative
Charismatic
Imaginative
Tenacious

Children with ADHD may exhibit:

Remarkable creativity
Energy and enthusiasm
Spontaneity
Resilience
Ability to think outside the box

Children with dyslexia often have:

Excellent skills in creative thinking
Problem-solving abilities
Strong verbal communication
Visual-spatial reasoning

Recognising and nurturing these strengths is fundamental to building a child’s self-esteem and fostering a positive self-identity. This strengths-based perspective can transform the way parents view the diagnosis, shifting the focus from solely managing difficulties to also celebrating and cultivating their child’s unique abilities.

The understanding that neurodivergent traits such as demand avoidance or stimming are often coping mechanisms or expressions of an internal state, rather than intentional misbehaviour, is pivotal. For example, the demand avoidance seen in PDA is a response to overwhelming anxiety and a need to protect autonomy. Similarly, stimming often serves self-regulatory functions, helping to manage sensory input or express emotions.

Processing Your Emotions: The Parent’s Journey

The period following a child’s neurodivergent diagnosis is often marked by a wide spectrum of emotions for parents. It is common to experience a sense of relief, particularly if there has been a long and challenging journey to understand a child’s differences and to finally have a name for their experiences.

This relief, however, can coexist with feelings of grief for the future that was perhaps envisioned, anxiety about the unknown path ahead, confusion, and sometimes even guilt or anger. It is vital for parents to recognise that all these feelings are valid and represent a normal part of adjusting to this new understanding of their child and family life.

“When we finally got the diagnosis, I felt a wave of relief – finally, an explanation! But then came the worry about what it all meant for his future.”

The journey of emotional processing is rarely linear; feelings may change, resurface, or evolve over time as families navigate new challenges and celebrate new achievements.

Self-Care Reminders for Parents

“Don’t forget yourself” – Your wellbeing matters too
“Taking time out is not bad parenting” – Rest is essential
Seek emotional support from partners, friends, family, or professionals
Connect with other parents through support organizations
Remember that a diagnosis is a tool for understanding, not a limitation

Several UK-based organisations offer dedicated support for parents, such as Mencap’s Learning Disability Helpline and online community, Contact’s Listening Ear service which provides 1-1 telephone appointments for emotional support, and the National Autistic Society’s Parent-to-Parent Emotional Support Helpline.

“Diagnosis isn’t anything to fear, it’s a key that helps you understand and access support. It doesn’t define your child it just enables them to be free to be exactly who they are.” - Miriam, parent

Taking the First Steps: Practical Guidance for England

Once a diagnosis is received, parents in England will find themselves at the beginning of a new phase of engagement with various health, education, and potentially social care services. This section outlines practical first steps.

Understanding the NHS Neurodevelopmental Pathway

A neurodevelopmental assessment is often the gateway to understanding a child’s needs, and post-diagnostic support can vary depending on the specific diagnosis and local NHS Trust policies. For instance, in Somerset, there is a commissioned post-diagnostic pathway for ADHD, but not currently for autism. In Bedfordshire and Luton, information and resources are provided regardless of the assessment outcome, aiming to support the child’s needs.

Parents may continue to interact with, or be referred to, a multidisciplinary team of professionals. This team can include Paediatricians, who assess and diagnose conditions like ADHD and autism; Educational Psychologists, who advise on learning strategies; Occupational Therapists (OTs), who help with daily living skills and sensory processing; Speech and Language Therapists (SaLTs), who assess and support communication; and Child and Adolescent Mental Health Services (CAMHS) for emotional and mental health support.

Informing the School and Working with the SENCO

Open communication with the child’s school or nursery is a critical next step. The Special Educational Needs Coordinator (SENCO) is the designated member of staff responsible for coordinating SEN provision within the school and should be the primary point of contact.

Key Questions for Your SENCO Meeting:

How does the school understand my child’s specific neurodivergent profile and associated needs?
What support is already in place for my child? Can I have a copy of any plans?
How will my child’s progress be monitored and reviewed?
What training or experience do school staff have in supporting children with this specific neurodivergence?
How can we establish effective home-school communication?
If current support proves insufficient, what are the next steps?
Is an Education, Health and Care (EHC) needs assessment something the school would consider requesting if needed?

Understanding SEN Support in Schools

For children identified with Special Educational Needs (SEN) who do not have an EHC Plan, schools in England must provide SEN Support. This involves a cyclical process known as the “graduated approach”:

Assess - The child’s difficulties are assessed to understand their needs.
Plan - Interventions and support are planned in consultation with parents and the child (where appropriate).
Do - The planned support is implemented.
Review - The effectiveness of the support is reviewed regularly (at least three times a year), and adjustments are made as needed.

Schools have a legal duty to use their “best endeavours” to ensure that children with SEN get the support they need.

Introduction to Education, Health and Care Plans (EHCPs)

An Education, Health and Care Plan (EHCP) is a legally binding document for children and young people up to the age of 25 in England who have significant and complex special educational needs that cannot be met through the resources typically available in a mainstream school’s SEN Support.

Who might need an EHCP?

An EHCP is considered when a child or young person requires more support than a mainstream educational setting can ordinarily provide through its SEN Support budget and resources. While a formal diagnosis can provide strong evidence, it is not an absolute prerequisite for requesting an EHC needs assessment; the focus is on the child’s needs and the level of provision required.

How to Request an EHC Needs Assessment:

Parents have the right to request an EHC needs assessment directly from their Local Authority (LA). The school SENCO can also make a request. Organisations like IPSEA provide template letters and guidance for parents wishing to make a request.

The Legal Test for Assessment:

The Children and Families Act 2014, section 36(8), states that the LA must secure an EHC needs assessment if it is of the opinion that the child or young person has or may have special educational needs, AND it may be necessary for special educational provision to be made for the child or young person in accordance with an EHC plan. This is a two-part test, and the threshold for triggering an assessment is relatively low.

Brief Overview of EHCP Contents:

An EHCP is a detailed document with specific sections (A-K). Key sections include: Section A (views, interests, aspirations of the child/young person and parents), Section B (Special Educational Needs), Section E (Outcomes sought), Section F (Special Educational Provision required), and Section I (Placement – the named school or type of school). The provision detailed in Section F is legally enforceable.

Accessing Support from Your Local Authority (LA)

Local Authorities in England have a duty to provide services for children in need, including disabled children, under the Children Act 1989. Parents can contact their LA’s social services department to request a “needs assessment” for their child and family. This assessment can determine eligibility for various support services.

Every LA must also publish a “Local Offer”. This is an online resource detailing all the support and services available in the local area for children and young people aged 0-25 with SEN or disabilities. This includes information on education, health, social care, financial assistance, leisure activities, and support for preparing for adulthood. Parents should search their LA’s website for their Local Offer.

A Note on Waiting Times

It is important for parents to be aware of the current situation regarding waiting times for neurodevelopmental assessments (such as for autism and ADHD) within the NHS in England. Recent data indicates that these waiting times can be very long, often significantly exceeding the NICE guideline of 13 weeks from referral to assessment for autism. As of December 2024, over 212,000 people were waiting for an autism assessment in England, with 90% waiting longer than 13 weeks. The median wait time for a first appointment for suspected autism after referral was over nine months between October and December 2023. Some children and young people can wait for years for an assessment. This reality underscores the importance of parents proactively seeking information, implementing supportive strategies at home, and connecting with support networks while navigating these formal pathways.

Building Your Support Network

Navigating the journey after a child’s neurodivergent diagnosis can be significantly eased by connecting with supportive networks and organisations. These resources can provide information, practical advice, emotional support, and a sense of community.

National Charities and Organisations (UK/England Focus)

Several national charities in the UK offer invaluable support for families of neurodivergent children:

National Autistic Society (NAS) - Provides a helpline (0808 800 4104), extensive website resources (including post-diagnosis guides), an online community for peer support, local volunteer-led branches, and the Autism Services Directory to find local services.
ADHD Foundation - Offers numerous resources for parents, including booklets on understanding and supporting ADHD, information for early years, online training, and workshops.
British Dyslexia Association (BDA) - Features a helpline (0333 405 4555), comprehensive website resources, a downloadable “Guide for Parents,” and information on signs of dyslexia, diagnosis, and educational support strategies.
PDA Society - A key resource for understanding Pathological Demand Avoidance, offering information on the PDA profile, helpful approaches (including the P.A.N.D.A.S. strategies), and resources for families and professionals.
Contact - For families with disabled children, including neurodivergent children. Runs a helpline (0808 808 3555), the “Listening Ear” service for emotional support, and provides online resources covering diagnosis, benefits, education, social care, local support, and an A-Z of conditions.
IPSEA - Independent Provider of Special Education Advice offers free legal information and advice on SEND law, helping parents navigate the EHCP process and educational rights.

Understanding Key Terminology and Concepts

As parents begin to navigate the world of neurodiversity and special educational needs, they will encounter a range of new terms and concepts. This section aims to clarify some of the most common ones.

Neurodiversity, Neurodivergent, Neurotypical

Neurodiversity - This term describes the natural and valuable variation in human brain function and behavioural traits. It posits that, just as biodiversity is essential for ecosystems, neurodiversity is essential for human society. It is an umbrella concept that encompasses all types of brain wiring.
Neurodivergent - This term is used to describe an individual whose brain functions in ways that diverge from dominant societal standards of “typical”. This includes individuals with diagnoses such as autism, ADHD, dyslexia, dyspraxia, Tourette’s syndrome, and others. It signifies a difference in neurological makeup, not a defect.
Neurotypical - This term describes an individual whose brain development and functioning fall within the range considered “typical” by societal norms. These terms are increasingly used to promote a more inclusive and less pathologizing understanding of neurological differences.

Person-First vs. Identity-First Language

When talking about individuals and their diagnoses, two main linguistic approaches are common:

Person-First Language (PFL): This approach puts the person before the diagnosis, for example, “a child with autism” or “a person who has dyslexia”. The intention is often to emphasize that the individual is not solely defined by their condition.

Identity-First Language (IFL): This approach acknowledges the diagnosis as an inherent part of an individual’s identity, for example, “an autistic child” or “a dyslexic person”.

Community Preferences in the UK: There is a strong and growing preference within the autistic community, and increasingly within other neurodivergent communities in the UK, for Identity-First Language. Many neurodivergent individuals feel that their neurotype is an inseparable part of who they are, not something they merely “have.”

Guidance for Parents: The most respectful approach is always to ask an individual (if they are able to communicate this) or their close advocates how they prefer to be described. If unsure, many in the UK neurodivergent community suggest defaulting to identity-first language, or carefully listening to how the individual or their family refers to themselves and mirroring that language.

For more information on supporting neurodivergent children, explore our other guides: