11th December 2023 • My Family Our Needs

In this interview, we introduce Henry Shelford, CEO and Chairperson at ADHD UK.

We asked Henry about how to go about getting a diagnosis and how parents can aid their children with ADHD. He spoke to us about avenues for support and the importance of taking the time to understand your child.

We began by asking Henry some questions from a parent:

Q: My child’s school has said we need to get him assessed for ADHD – what do we do next?

Most of the time your school should put in a referral on your child’s behalf to the CAHMS team – but it does vary by area and some areas ask for GP involvement. Confirm the process with your school. Speaking to your GP can often be useful in terms of understanding the process and learning about the pathway and any support options that may be available to you. We recommend you get a confirmation that your child’s referral has been accepted and that you are on the relevant waiting list. We’ve heard of parents thinking they’re halfway waiting when in fact paperwork blunders mean they’ve not yet even joined the back of the queue.

Q: How do we get an assessment for ADHD?

When going through the diagnosis process, it’s important to know you have choices:

• The default choice – The referral goes to your local NHS Team. This is usually the best option as the team is familiar and integrated with your school, appointments are usually in person, and other local NHS services can be brought in as needed.
• Right to Choose – If you are based in England under the NHS, you now have a legal right to choose your mental healthcare provider and your choice of mental healthcare team. It is equally valid for child referrals and adult referrals. This means that, for instance, should you decide the waiting time for your ADHD assessment is too long, you can choose alternative providers. Visit our Right to Choose page where you can find information about providers and make informed choices.
• Go private – ADHD can only be formally assessed by a specialist. Usually a UK registered psychiatrist, a specialist ADHD nurse, or other qualified healthcare professional. Read our guide here about navigating a private diagnosis.

In our research, we’ve found waiting times to vary enormously from 5 weeks and 5 years. We recommend speaking to both your GP and school about waiting times. If they don’t have exact data they should at least be able to tell you how long their most recently diagnosed parents/pupils have had to wait.

It is worth noting that there is under diagnosis across the board, but girls are significantly underdiagnosed. In addition, we are also facing a medication crisis where there are problems with the availability and supply of various medications to help manage ADHD symptoms.

Q: Will the label of ADHD help or hinder my child? My partner and I are at odds over getting an assessment.

This question always makes me incredibly sad as it is essentially asking whether the discrimination is worth it. We’re trying to change that idea. It’s important to know how tough ADHD is and that the help a diagnosis brings is needed. 1 in 10 men and 1 in 4 women with ADHD will at some point try to take their own life. For people with ADHD, life is very difficult, however, a diagnosis can bring enlightenment to help prevent the worst. It can bring formal help, support and legal protections in education and, in the future, in the workplace. Diagnosis provides opportunities for support, school SEND support, exam support, and more which would not be available otherwise.

Getting a diagnosis is up to you. Who you tell is up to you. It is then up to you what you do with this information.

A way to describe it is living with ADHD is like trying to get through a maze with the lights off. You’re banging into things, hurting yourself and maybe others. Having that diagnosis turns the light on. Your maze is still harder than it is for many, but you can see more clearly and navigate as you couldn’t before.

Knowing you have ADHD is life-changing for many. Depriving someone of that diagnosis and thereby support is not necessarily the simpler choice. We know of angry adults whose parents chose not to get them a diagnosis.

When adults are diagnosed with ADHD, most talk of three main emotions:

1. A Peace – that it makes sense. It helps fit and explain themselves.
2. An Anger – for how hard life has been to this point.
3. A Joy – for how life can be from now.

Deciding to request an assessment is a big question for a parent. These choices are hard. A diagnosis doesn’t change a child. It just tells you more about them. They either have ADHD or not. A diagnosis just informs you of their status. It can give you and your child awareness, support and understanding. Of course, it depends on personal situations and everyone’s circumstances are different, but it is a decision which needs a lot of thought put into it.

Q: How do I help my child succeed at school?

People with ADHD have fundamental differences. As a parent, you need to help them use their positive differences to the max and minimise their negative differences. Learn about their differences, for example, it may mean working to get periods of hyperfocus on schoolwork and recognizing that a solution for a neurotypical child simply doesn’t fit. It’s being able to know you need round peg solutions– and not forcing the square peg solutions you see working for others.

With those who are successful, we almost always see that they know how to do things differently. Some things you will need to do differently. You need to have a plan in place for when they are finding it hard or can’t do things a certain way.

It’s worth noting that ADHD runs in families. We see families who embrace their difference and work together. We also see family members in denial of their own ADHD who will deny that their child has ADHD and disallow them a diagnosis. This can be extra-ordinarily difficult for everyone.

We also asked Henry some more questions parents may find useful.

What is the role of medication in managing ADHD and what should parents consider?

ADHD medication is an oddity in that many without any experience or knowledge feel comfortable weighing in a medical decision they are not a party to. There are parents, children and adults with ADHD who opt to take medication and there are parents, children and adults with ADHD who opt not to. Both are valid and should be a personal decision made alongside your medical professional.

Medication makes a difference for around 80% of those who try it. Those who opt for medication talk about it being a helping hand. It doesn’t “cure ADHD” nor does it change a personality. Most will talk about it helping the ability to choose what to focus on and then stay focused on it. With that focus comes the ability to hold the thought that allows you to learn intellectually, recognize and learn from your emotional reaction, and build social skills.  Many describe medication as life-changing.

Medication isn’t for everyone and a large percentage of people will opt not to use it and focus instead on behavioural adaptations and other therapies. Most people taking medication will also pursue those adaptions as well.

There is another large group who opt for medication as an aid while they built their behavioural strategies and other support. They will then stop taking medication as they feel they are well placed to do so. Perhaps opting for medication only on certain days.

It is important to note that there multiple paths. You are not constrained and you can change anytime. So you focus (no pun intended) on what is best for your circumstances.

Can you provide insights into the potential long-term outcomes and challenges for children with ADHD as they transition into adolescence and adulthood?

Everyone is a unique individual plus ADHD. Self-understanding and support are so important. People can succeed in every aspect of society and shouldn’t feel constrained when it comes to their choices. Support to get people with ADHD to that place of success will look different. We see them building strategies which are life-changing. At university, they can have access to Disabled Students’ Allowance and at work, they can have a range of disability support. ADHD coaching to help build up strategies is also available.

Having awareness of support will look different and you’re looking to build this up for them and help them. Sadness does not equal depression and being anxious does not equal anxiety, like low attention span does not equal ADHD.

When supporting them, ensure you are giving them emotional support and social maturity. These can have a huge impact. Talk them through their emotions, reactions, what is happening in friend groups, etc.

Do you have any messages or advice for parents raising children with ADHD?

The biggest thing is to foster awareness and understanding and ensure you know how to help. Helping them to find the things that work for them and avoid damage from the negativity of things that don’t. Setting up systems is life-changing and can often last for life – they become ‘just how I do it’. They make things easier for your child and for you.

Everyone diagnosed with ADHD, or parenting a child with ADHD, is trying to work out where the line is between them and their condition. Sometimes you’ll need to see the difference between when something is tough because of ADHD and therefore needs kindness and support and where something is just tough and needs a helpful push! It is impossible for a parent to look inside their child’s head so engaging in learning and understanding is the best way to help you understand your child and, in turn, you help your child understand themselves. Support groups and forums are a great way to gain lived experience on what having ADHD means and what can make a difference.

We know so many people with ADHD who have become wonderful successes and bring joy to themselves and others. We can be brilliant. I know it is tough. You’re amazing. Thank you.

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