All about neurodivergence
The simple answer is that we don’t know exactly what causes the brain differences in neurodivergence, or if there is a cause at all. Research suggests that both autism and ADHD run in families so these differences may be passed onto a child through their parents’ genes. There are some environmental factors which could also increase the likelihood of a child being autistic or having ADHD. This includes pregnancy or birth complications e.g. if the baby was born prematurely, was a low birth weight or a twin/triplet pregnancy. There is also thought to be an increased likelihood if a child has brain damage or if either parent is older in age. However, it is important to know that none of these factors cause neurodivergence, but a complex combination of these genetic and environmental factors can make some children more likely to be autistic or have ADHD. This does also not mean that being autistic or having ADHD means that there is something wrong with your brain. It has just developed differently.
It’s true that more boys are diagnosed with neurodivergent conditions such as autism, ADHD and dyslexia. In the past it was assumed that autism and ADHD were much more common in men and boys, and only very rarely present in women and girls. We now know this is wrong. There are many neurodivergent women, girls and non-binary people. Neurodivergence can present slightly differently in women and girls. They may mask their difficulties in school and social situations. Although there has been more research into this area and clinicians are now more skilled at recognising neurodivergence in girls, there are often still barriers to them accessing diagnosis and support.
Autistic children and young people may communicate differently. Some autistic children are non-speaking, meaning that they don’t communicate using spoken language. It’s common for families to wonder if their child will develop speech in the future and this can be worrying. Research suggests that around 25% of autistic people are non-speaking. However, there are lots of other ways to communicate. Autistic people may communicate by using body language, pictures or objects, written words or through technology. Often a child/young person will communicate through a combination of these. As adults, it’s important we adapt our own communication and the child’s environment to give them the greatest opportunity to understand and communicate. We call this a Total Communication approach. You may find working together with a Speech and Language Therapist helpful to support your child’s communication. Details of the Leeds Children’s Speech and Language Therapy service are here including how to make a referral can be found here:
Autism and ADHD are both lifelong differences in the way the brain has developed from birth. As such there is no ‘cure’ for them. Autism and ADHD are not diseases or illnesses, and many neurodivergent people feel their diagnosis is a core part of their identify. We do not believe they need a ‘cure’ and their differences should be seen as just that, different, and not a disadvantage.
There is no medication that is used to treat autism, though sometimes professionals may recommend medical treatments for other conditions that affect autistic people, e.g. sleep difficulties or low mood. There are however many other ways to support an autistic child or young person to achieve their full developmental potential. This can include adapting the environment to make it more manageable, adapting communication styles or sometimes direct intervention or therapy.
There is medication available to support some children and young people with a diagnosis of ADHD, although it’s very important to know it is NOT a cure. Further detail about ADHD Medications can be found towards the bottom of our ND assessment – school aged children – MindMate page
Sadly, there are ‘so-called cures’ and dodgy interventions which you may come across online. They are potentially harmful or even life threatening. Read more on the NHS website about therapies and treatments for autism (and other neurodivergent conditions) that the NHS know to be fake and harmful Treatments that are not recommended for Autism – NHS
A. Not necessarily. Neurodivergent people are likely to learn differently to others but would not all be considered to have a learning disability. With the right support and a suitable environment many neurodivergent people are very capable and independent.
A Learning disability is defined by the charity Mencap as;
‘a reduced intellectual ability and difficulty with everyday activities – for example household tasks, socialising or managing money – which affects someone for their whole life. People with a learning disability tend to take longer to learn and may need support to develop new skills, understand complicated information and interact with other people.’
Some neurodivergent children and young people would also fit the criteria for a diagnosis of learning disability. It’s estimated around 30% of autistic people will also have a learning disability. There are different ‘degrees’ of learning disability which can affect all aspects of life, from studying in school to learning how to wash themselves or make a meal. Some people will be able to live fairly independently – although they may need a degree of support to achieve this – while others may require lifelong, specialist support.
More information can be found on our LD MindMate page.
The NHS does not recommend exclusion diets e.g. excluding gluten, dairy or caseins (Treatments that are not
recommended for Autism – NHS (www.nhs.uk). There is not enough evidence to suggest that these diets change autistic/ADHD or other neurodivergent characteristics. Many neurodivergent children experience sensory differences and eat a small range of foods. Further limiting your child’s diet could cause them a lot of distress. There is a risk of inadequate intake of nutrients, low energy, weight loss and poor growth.
If you are considering making a significant change to your child’s diet, it is strongly recommended that you seek advice from your GP or dietician first.
There is no link between autism and vaccines. Extensive research has been carried out over the past 20+ years and the results have clearly shown there is no link.
All about diagnosis
The majority of NHS support available does NOT require a formal diagnosis of either autism or ADHD. NHS services such as Speech and Language Therapy, Occupational Therapy, Dietetics and Community Paediatrics, offer support based on a child or young person’s need, rather than their diagnosis. The referral criteria would need to be met to access these services – a diagnosis of autism or ADHD in itself is rarely enough.
If your child has received a diagnosis privately, you will need to provide a copy of the full report from their assessment to their GP and school. If the report meets the assessment standards set out by National Institute for Health Care and Excellence (NICE) (see links below), then the diagnosis can be added to your child’s health record. If there is a concern that your child’s assessment was not completed to a high professional standard and does not meet the NICE standards, then you may wish to seek a referral for NHS assessment. If you have received an assessment through a Right To Choose provider, it would also need to be confirmed that the assessment has met clinical standards.
If your child has a diagnosis of ADHD and you are seeking NHS treatment options (medication) a referral for this will be needed post diagnosis. This should be made via MindMate SPA (or if known to another part of CYPMHS speak with the clinician involved in your child’s care). If you have started medication treatment for your child privately, the prescribing clinician will remain responsible for this until a CAMHS appointment is offered. CAMHS are not currently able to expedite appointments based on medication needs. It might be possible for a shared care agreement with your GP to offer repeat prescriptions; this will need to be arranged with the private prescriber and the GP. Currently waiting times are very lengthy so it’s important to consider this if starting privately prescribed medication.
Private diagnoses of autism and ADHD often recommend onward support from services. It is important to know these can be considered but how support is offered may differ as it will be in accordance with the Leeds offer.
Overview | Autism spectrum disorder in under 19s: recognition, referral and diagnosis | Guidance | NICE
Overview | Attention deficit hyperactivity disorder: diagnosis and management | Guidance | NICE
Yes absolutely. As our awareness of neurodivergence grows, it is increasingly common for parents to reflect on their own life experiences and wonder if they might be autistic and/or ADHD too. In Leeds adults can access a diagnostic assessment via the NHS. Further details or the adult service and how to make a referral can be found below.
Over the years there have been several different terms or phrases used to refer to autism, including Autism Spectrum Disorder and Asperger’s. Lots of autistic people say that ‘autism’ is their preferred term. They feel the word ‘disorder’ or ‘condition’ has negative connotations. Therefore, in Leeds we generally use the word autism.
You might have heard the term Asperger’s before or know someone who has this diagnosis. ‘Asperger’s’ used to be given as a diagnosis to autistic people who also have strong verbal language skills. In 2013 the diagnostic criteria changed to recognise that Asperger’s is a part of the autism spectrum, and so is not given as a separate diagnosis anymore. Some people who received a diagnosis of Asperger Syndrome continue to use this terminology to refer to themselves, which of course they are welcome to do.
Education and support
The majority of support services are available with or without a formal diagnosis. This includes NHS support, cluster support, websites, local support groups and charities.Children and young people do not need a diagnosis to get support in school. Schools must do all they can to make the special educational provision that a child needs. Both funding and EHCPs (Education and Health Care Plans) are based on a child’s need rather than their diagnosis. The only time when a child would need a diagnosis in education would be to access an autism-specific specialist school. The STARS team (Specialist Training in Autism and Raising Standards) also only work directly with children who have a confirmed diagnosis. However much of their work, including training for educational settings and parental workshops can be accessed without a formal diagnosis.
Many children are complex and will not fit neatly into one diagnosis or another. These children will never have one label or diagnosis but a description of their difficulties and what support they need. These families can still access support based on needs.
You can find out more about support available in schools here
The majority of neurodivergent children, including those with diagnoses of autism and ADHD, will receive their education in mainstream schools. Children and young people may require extra support and adjustments in their mainstream school. Schools are very used to supporting neurodivergent children and are able, and legally required, to make adaptations. Each school has a SENCO (Special Educational Needs Coordinator) who you can ask to speak to. They will be able to tell you what is already in place and what extra support is available. You can find out more about support available in schools here
If your child’s needs are not able to be met in a mainstream school, you may be able to apply for a specialist school. This will always be a decision taken together with a child’s family, and you would have the opportunity to look at different schools available. Find out more about the different types of specialist schools available in Leeds here
You don’t need a diagnosis for an EHCP/EHC plan. Whether or not a child qualifies for an EHC plan depends on their needs, not on their diagnosis.
You can find out more about Education Heath and Care Plans here
Children do not need a formal diagnosis of autism or ADHD to be awarded funding. Whether or not a child qualifies for funding depends on their needs, not their diagnosis.
Funding for Inclusion (FFI) is the mechanism in Leeds for delegating funding from Parliament to all schools and settings for children and young people who require additional support for Special Educational Needs (SEN). The process of allocation is based on need; those with the highest complex SEN and who require the highest level of provision receive the highest funding. You can find out more about Funding For Inclusion here
You do not need a formal diagnosis to claim for Disability Living Allowance (DLA) or Carer’s Allowance.
One of the main sources of financial support available is the Disability Living Allowance (DLA) which is provided by the government to help with the additional costs faced by disabled children under the age of 16. You do not need a formal diagnosis to claim for DLA. A child or young person may qualify for DLA if they have a physical disability and/or Special Educational Needs and require more help or supervision than other children of the same age.
Seek support from your child’s school or local support charities, such as Leeds Carers for help filling out the forms
Top tip for filling in a DLA application form – make a diary of all the things that you do for your child, every day, that are significantly above and beyond that of a typically developing child of that age. For example, adapting where you go and how you get there, what activities you do each day and what your child needs to stay happy and safe, that is additional to their typical peer. Record this diary for a week or 2. Then use this diary to help you fill out each section of the DLA form more easily.
Further information on Financial Support is available here