SUPPORTING CHILDREN
& YOUNG PEOPLE WITH OCD
One of the best way you can empower yourself, and the young person in your life, is by learning everything you can about OCD. It's also by finding out what support is available, and what resources are out there that your young person can access. You can find some ideas here.
Please remember than neither you nor your young person are alone in this process, there is ALWAYS someone to contact. It's just about knowing who.
Before reading through the following I just want to mention a few important things :
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Even though the contents of this page is aimed at helping children, young people and their guardians, this page as it stand is currently designed to be read by adults. We are working hard on creating a young person section of this website. Adults, whatever the resource is, and despite who it is aimed at, please take a good look through it first before sharing any of this content with your young person and use discretion to decide what is age-appropriate.
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The OCD charities are amazing and have spent years creating wonderful banks of resources and information for those effected by OCD. I would always suggest that you start by trawling through their websites and finding our what practical support and information is available. You can find this information below.
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OCD is a condition that is greatly misunderstood. As well as the more well-known symptoms, OCD can involved very scary and distressing intrusive thoughts. Your young person or child may be terrified that they will act in a way opposite to their values. People with OCD tend to be highly compassionate and caring. OCD involves obsessing about worse case scenarios so please don't be frightened if your young person talks about fears of deliberately harming someone either violently or sexually. They are intrusive thoughts, they do not mean anything. It is the OCD that is making these thoughts so frightening for your young person. I have written about how to disclose distressing intrusive thoughts in the Medical Support section below. Remember, talking to an OCD charity helpline is also helpful. They will be able to support you here - there is nothing you can tell them that they haven't heard a million times before.
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OCD can exist alongside other mental health disorders and conditions so it's well worth having a read about some of them to familiarise yourself. They can be Autism, Body Focused Repetitive Behaviours, Eating Disorders, Tourette Syndrome, Body Dysmorphic Disorder, Depression, Panic Disorder, Generalised Anxiety although this list is not exhaustive. I know this can sound totally overwhelming so please remember diagnosis and recovery takes place in small steps, you do not need to know it all now.
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PANS/PANDAS is a condition in which awareness is only started to grow. It's a neuropsychiatric condition which is triggered by a misdirected immune response to a variety of triggers - it can cause an onset (often sudden but not always) of OCD symptoms amongst a whole range of other symptoms. PANDAS is very similar but is triggered by Streptococcal infection. It tends to effect young people more than at any other age. Parents and carers, please read about this condition as part of your general research, OCD symptoms can sometimes be the only physical symptoms and the usual OCD treatment doesn't tend to help. You'll find information about PANS/PANDAS in the next section.
Organisations and Websites
The absolute best thing you can do when starting to look for resources and support is to familiarise yourself with the content of these charities/ organisations. Especially the top four. They have an incredible amount of support for families and for people of all ages ages. The charities host support group sessions, have help lines and have incredible teams that can help you with anything. Start there!
OCD Action is the national charity focusing on Obsessive Compulsive Disorder (OCD).
They are a fabulous London-based charity - their support is nation wide. Check out their website to hear about all the wonderful help and support they can give you. If your young person is 14-25 they may find OCD Action Youth helpful.
Run by the amazing Ashley Fulwood with help from a brilliant range of volunteers. OCD UK has an excellent section for young people.
The International OCD Foundation
This is a one stop shop for learning about OCD and the information it holds will probably answer many of the questions you have about the disorder. It’s U.S. based so their lists of therapists and courses are somewhat limited for us in the UK but you can’t beat this website for educating you on all things OCD. There’s also a huge section on OCD in children so if you’re a parent or guardian, this information could prove invaluable. Also check out their Anxiety in the Classroom project.
Created and run by the incredible Stuart Ralph, this podcast is amazing. Every week Stu brings out an interview with someone from the OCD community - therapists, psychologists, advocates, etc. The podcast has been going for years and hosts interviews with people from all over the world - it is an enormous and vital resources for us. He has quite literally created a huge online library, of the highest quality, for us to find out everything we can about OCD and recovery. There have been podcasts specifically aimed for OCD support for children and young people.
An excellent resource for all those dealing with OCD centering around intrusive thoughts. This non-profit was founded by Rose Cartwright and Aaron Harvey - both of whom grew up with, and still experience, distressing intrusive thoughts. This page talks openly about harm and sexual based intrusive thoughts.
Chris Baier's daughter has OCD and after a particularly difficult summer decided, with the rest of his family, to advocate for OCD in children. His first stop, this beautiful and incredibly moving documentary by Chris himself and Kelly Anderson. It follows the journeys of young people with OCD in an interview format from the start of symptoms surfacing all the way through to getting diagnosed, therapy, exposure and a future beyond the reaches of debilitating OCD. It's difficult to put into words just how incredibly brave and eloquent every single one of these young people are - the documentary is as informative and it is inspiring.
They also host facebook live interviews with young people with OCD.
Anxious toddlers to Anxious Teens
Natasha Daniels
Ignore the website title, this website is for all young people. Natasha hosts a wonderful podcast. It would take all day for me to describe the resources and information on offer here so it'll be worth you just checking it out yourself - it's jam-packed with helpful information. Some elements require payment, there are courses available, but the majority of information is free.
PANS/PANDASUK
An incredible charity that support the young people and the families of young people effected by PANS/PANDAS. If your child or young person has has a sudden onset of OCD symptoms (alongside other symptoms - please see site) it is really important that you read about the conditions.
Twitter has an incredible group of fierce parents fighting for PANS/PANDAS awareness - just following the hashtag will help you find them. They are always happy to help and will take you under their wing.
Medical Support
Very often the first step for getting help for a child with OCD is either through the school or a GP. Before your GP appointment, it's a good idea to write down everything you want to talk about. OCD Action has a great section on preparing for a GP appointment. If possible, ask for someone who has experience in treating OCD. Even if you cannot get a specialist, you can ask for the treatment to be in line with NICE (Nice Institute for Health and Care Excellence) guidelines for OCD.
During this appointment your GP, if they think there is a need, will refer you on to NHS Mental Health Services.
If things still don't improve, there will be a referral to specialist mental health services such as the CAMHS services at the South London and Maudsley NHS Foundation Trust.
All of this can sound very frightening and new and that is to be completely expected. Please know that my following this route you are giving your young person the best opportunity they can to get better. OCD tends not to disappear by itself.
If you are worried about disclosing the nature of your young person intrusive thoughts please read this and remember you can talk to the OCD charities about this too.
Educational Support
If you are concerned abut your young person please make sure you make a meeting with their schools SENDCo (Special Educational Needs and Disabilities Coordinator of the school. They can arrange for an educational psychologist to come to school to discuss how they can adapt the school day to help your young person. They can also help you to make a referral to CAMHS (Children and Adolescence Mental Health Services). Click here for more information about CAMHS.
The school should be willing to make reasonable adjustments to accommodate your child's needs. These resources from OCD Action will help:
OCD Guide for parents
OCD Guide for Young People
OCD Guide for School Personnel
Support at University
Private Practice
Sadly, waiting lists for therapy and CAMHS are long and although it's getting better, miseducation about OCD is still present in the NHS. You may decide as a family to look for private treatment. Please remember when looking for people that they should know and understand OCD. They should also be registered with the British Association for for Behavioural and Cognitive Psychotherapies (BABCP). I am currently working on this section so will add more as I become familiar with different practices. But for now this is a great start.
The Integrative Centre for OCD Two amazing lived experienced experts turned OCD specialists Jonny Say and Stuart Ralph have set this up. They treat young people and children too so please check them out.
Space Treatment
This treatment is usually aimed towards to parents and guardians. In most cases the child or young person does not need to attend the treatment sessions. Parents who participate in SPACE will learn skills and tools to help their child overcome anxiety, OCD or related problems. There are a wide range of therapists available across different countries.
Books
The following are links to the main OCD charities book recommendations. The lists are extensive and extremely well-researched and rhe charities will have full vetted the books first too.
OCD Action Books
OCD UK Books
IOCDF Books
NON-FICTION
Standing Up to OCD Workbook for Kids 6-11 year olds
40 Activities to Help Children Stop Unwanted Thoughts, Control Compulsive Behaviors, and Overcome Anxiety.
Tyson Reuter
These next three books are part of the same series and are wonderful - 6-12 year olds.
1) What to Do When Your Brain Gets Stuck: A Kid's Guide to Overcoming OCD
2) What to Do When You Worry Too Much: A Kid's Guide to Overcoming Anxiety
3) What to Do When Mistakes Make You Quake: A Kid’s Guide to Accepting Imperfection
There are also books on bedtime worries, feeling negative or 'grumpy', anger, and more. Please note most of these books are workbooks so if you want to buy used it would be a good idea to check they haven't been written in.
Dawn Huebner who writes many of these books also writes books for older children. A list of her books are here.
Whats Going on Inside my Head? 5+ and 7+ readers
by Molly Potter
The OCD Workbook for Teens: Mindfulness and CBT Skills to Help You Overcome Unwanted Thoughts and Compulsions
Jon Hershfield
The ACT workbook for Teens with OCD
By Zurita Ona
Acceptance and Commitment Therapy (ACT) is a reasonably new form of therapy that many with OCD find helpful. It involves mindfulness and acceptance practices and is well worth reading about.
Stand Up to OCD!: A CBT Self-Help Guide and Workbook for Teens
By Kelly Wood
Stuff That's Loud: A Teens Guide to Unspiraling when OCD gets Loud.
By Ben Sedley and Lisa Coyne
The OCD Workbook for Teens: Manage Intrusive Thoughts and Compulsive Behavior with CBT and Mindfulness
by Anthony Bishop
A Free Pocket Sized OCD Guide for Young People
by OCD -UK
My Hidden Chimp
Prof Steve Peters
FICTION
Unravelling Rose
by Brian Wray
A Boy Called Hope
Lara Williamson
Kissing Doorknobs
By Terry Spencer Hesser
OCD Daniel
By Wesley King
The Goldfish Boy
By Lisa Thompson
When I see Blue
By Lily Bailey
Rory Hobble and the Voyage to Haligogen
Max Hawker
Frankie's Foibles: A story about a boy who worries
Kath Grimshaw
Practice Being Brave: Owning My OCD
By Molly Gambrel
All The Things That Could Go Wrong
Stewart Foster
For Parents and Carers
Freeing Your Child from Obsessive Compulsive Disorder
Tamar E Chansky
The Family Guide to Getting Over OCD: Reclaim Your Life and Help Your Loved One
Jonathan S. Abramowitz
When a family member has OCD
Jon Hershfield - (Any book by Jon Hershfield is absolutely incredible)
Podcasts
Anxious toddlers to Anxious Teens - podcast
Natasha Daniels - an excellent resources that covers loads of information about support a young person with OCD.
Unstuck: A kids OCD Movie - facebook live chats
Chats with young people and specialists about OCD in young people. You can access all of their Kids Speak Out chats here.
The OCD Stories
An incredible weekly podcast about OCD.
Your Anxiety Toolkit
Run by OCD specialist Kimberley Quinlan, this is a hugely compassionate podcast about OCD, anxiety and eating disorders.
Radio Shows
Mind Over Matter
Matt Shoebridge. This radio station has sadly been discontinued but this episode includes mum Sarah Dobson talking about her daughters experience of OCD and how they cope as a family.
There are new wonderful resources coming out all the time and I'll make it a prioirty to keep this page updated so pleae keep checking back. As always, if you have anything that I could add to the list please let me know the details and I'll look into them.
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There are whole communities of people living with OCD out there on the internet. We're an international, tight knit and supportive community. There will be LOADS of people on social media who are not on these lists on this page. I deliberately only included the people who are in the public eye already and who I know really well. To find others, keep an eye out for those talking about OCD – you’ll soon find lots of other people who have been through the same as you and understand the journey you are on.
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PLEASE remember that although it’s fantastic to find people who have been through similar to us, and to feel the massive relief that we are not alone, it is also essential that we focus on recovery. Try not to spend too long caught up in chats about how hard life with OCD can be. Yes, there’s a place for that too, but try to use the groups for hope and recovery ideas and if you’re coming away from them feeling defeated rather than hopeful it may be time to leave that particular group. Also keep an eye out for repeated reassurance seeking - that is a compulsion and can make OCD much worse.
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Whilst searching, you're likely to come across the term 'Pure O'. Everyone seems to have their own opinion about whether this term should be used or not, but basically it is used to refer to someone who has internal compulsions. They do not visibly display any outward signs of compulsion but will do so 'internally'. Examples of internal compulsions are things like scanning memories for evidence, seeking reassurance through memories of previous experiences, etc. Whatever your view, it's all OCD and that content will help you too.
Please make sure you look after yourself when you are online. There are a few of people working within the community who take money for doing therapy even if they aren't trained professionals (the term 'therapist' isn't protected in many countries and anyone can use it). Non-professionals SHOULD NOT be doing therapy - it can be dangerous and is highly unethical.
For more information on how to safely use the services of advocates please check out this blog.
And just a quick note to say that in England if you are feeling very poorly you are advised to head to your local A and E department. Or if you have been given a crisis number by your Dr to ring them and they can get help to you. Please do this if you need to, there is no shame in it, I’ve done it. It takes a strong person to realise they need support. You’re far too important not to ask for it.
Lots of love everyone.
Cat xx