While having a diagnosis can be helpful to identify and validate the difficulties people may face, it’s not always required for accessing support for autism or ADHD. Support should be needs based, tailored to an individual and made available based on a person’s difficulties and challenges, even without a formal diagnosis.

Here’s why a diagnosis isn’t always necessary for support:

• Focus on Needs: Support is based on the individual’s specific needs, not just a diagnosis.
• Varied Support Options: Support can come from various sources, including professionals, charities, local authorities, and family/friends.
• Education: Education settings can offer many different types of support and can help to access more specialist support without a diagnosis. A diagnosis is not needed for an Education, Health and Care Plan. EHCPs are based on assessed needs, not diagnosis. Evidence from school and professionals can be sufficient.
• Social Care: Social care assessments can be requested to identify support needs, and don’t require a diagnosis.
• Benefits: Some benefits are awarded based on individuals' needs and how they impact daily living, including Disability Living Allowance, and Personal Independent Payment.
• Impact of assessment: A diagnostic assessment can offer understanding of neurodiverse presentation and validation for individuals, but it’s not essential for accessing support (such as reasonable adjustments in school or the workplace).

While an assessment can be beneficial for understanding neurodiverse presentations, it’s not a requirement for receiving assistance tailored to individual needs. Individuals can access support through various avenues, even before or without a formal assessment. The exception to this is if you require ADHD medication, when a formal diagnosis would be required.

As a population we are getting better at understanding what neurodiversity looks like and are better able to identify where a referral for assessment might be helpful. This is one reason why there has been a rapid increase in need for assessment in the UK and in many parts of the world.

In the Black Country, as elsewhere nationally and internationally, this surge in demand has outpaced the capacity of NHS services, leading to long waiting lists.

We are working hard to increase the number of assessments being offered, prioritising those who have waited the longest and delivering the most efficient pathways possible to reduce waiting times, as well as provide help for families while they wait.

When prescribing medication, the service needs to be specialist-led and this is why it can be a challenge to support the prescribing of certain controlled drugs or prescription medications, whose manufacture, possession, and use are heavily regulated by government laws due to their potential for abuse or harm.

Our aim is to begin stabilising and reducing waiting times over the next six months. The waiting time nationally for completing ASD/ADHD assessments can range from 1 year with some parts of the UK reporting waits as long as 13 years.

Those in the Black Country waiting for assessment for ADHD and autism can access support while they wait via  Attention Deficit Hyperactivity disorder (ADHD) and Autism Spectrum Condition (ASC).

Speak to your SENCO via your child’s education setting, they may access support such as Mental Health in Schools teams or Educational Psychology

There are also resources available online for adults via:

• National Autistic Society – provides advice and guidance on autism assessment, including practical steps to take while waiting
• ADHD UK – offering information, peer support and resources about diagnosis and coping strategies
• Mind – provides information on ADHD, mental health and practical wellbeing tips.

If a patient has been seen by an NHS ADHD service and medication is recommended, this is normally started by the NHS service or the Right to Choose service. Once the dose is stabilised, GPs can prescribe as part of a Shared Care Agreement.  

This enables the care and treatment you receive for ADHD to be shared between the NHS service and your GP, or between the Right to Choose provider and your GP This will only occur when your ADHD medication is stable. For more information, please see the General Medical Council (GMC) practice advice Shared care - professional standards - GMC

• GPs are not expected to initiate or manage treatment without support from a specialist.
• They retain the clinical right to decline shared care if they feel it is unsafe or inappropriate.
• Shared care agreements are voluntary and require agreement from both the specialist service and the GP.

If the provider only offers a diagnosis without follow-up, any request for your GP to prescribe would be considered a transfer of care, not shared care, and GPs would be advised to decline.

Right to Choose providers may have a contract that allows prescribing; where this is the case, monitoring and follow-up will be by the Right to Choose provider. It is best to check this before being referred.

If someone is seen privately and medication is recommended, then prescribing would also be expected to be private.

Yes. If you begin treatment privately, you can request to transfer to NHS care at any stage, provided the treatment is commissioned by the NHS. However, you may need to wait and be reassessed by an NHS clinician, and you won’t receive preferential treatment due to having started privately. Please be advised that you cannot remain on two waiting lists.

Will the NHS cover costs for private assessments or treatments?

No. If you choose to pay privately for assessments or treatments that are not commissioned by the NHS, you are responsible for all associated costs—including monitoring, investigations, and management of complications. The NHS will only cover costs of services where the GP has made a referral.

Can I mix NHS and private care for autism or ADHD?

Not within the same episode of care. NHS and private care must be clearly separated. For example, you cannot have a private ADHD assessment and then expect NHS prescriptions or monitoring unless you meet NHS criteria and are reassessed by an NHS clinician.

Can my GP prescribe ADHD medication recommended by a private consultant?

Only if: The medication is listed on the ICB formulary (a list of medicines, dressings, or other healthcare products that are approved for use within a specific Integrated Care System (ICS). It serves as a guide for prescribers, helping them choose cost-effective and clinically appropriate items for their patients) or normally funded by the NHS. This can only take place if there is an appropriate shared care agreement in place accepted by the GP.

Currently there are no shared care agreements in place between private providers and Black Country ICB, this is under development.

What if the private consultant recommends a drug not funded by the NHS?

Your GP may seek advice from the ICB about an NHS-funded alternative. You can still choose to purchase the recommended drug privately, but the NHS will not cover any part of the cost.

What happens if I want to switch from private to NHS care mid-treatment?

You can do so if the treatment is commissioned by the NHS. However, the NHS will not reimburse any private costs already incurred. Any change of provider means the patient will usually join the NHS waiting list from the point of referral, which may lengthen the overall waiting time.

Improving Awareness and Access

We’re working with national and regional colleagues to raise awareness of the Right to Choose, helping you understand your options for care.

We’re also part of the national ADHD taskforce, the Midlands ADHD Community of Practice, and the National Clinical Reference Group which is focused on improving access to services and patient safety.

Making the Most of Resources

We’re reviewing how services are funded to make sure we’re using NHS money wisely—so we can improve care and keep it sustainable for the future.

If you're considering a formal diagnosis for autism or ADHD, especially as an adult, it's important to reflect on what you hope to gain from it. A diagnosis can offer clarity, validation, but it’s not guaranteed, and the process can be lengthy and complex. There may not be any additional services to support at the end of the process. Pursuing a diagnostic pathway does not always result in a diagnosis, and it’s helpful to manage expectations from the outset.

Before starting the diagnostic journey, you may find it useful to explore community support, peer networks, and self-help resources. These can often provide practical strategies and emotional support to help manage challenges day-to-day. For some, these resources may be enough without needing a formal diagnosis.

However, if you are seeking ADHD medication, a formal diagnosis is required before any prescriptions can be made. In these cases, following the diagnostic pathway is essential.

Taking time to consider your needs and options can help you make a more informed decision about whether a diagnostic assessment is the right step for you.