Asd and ocd. Treatment at home and hospitalisation

[sinkorswimParticipant]

HELP

hi I really need some feedback from anyone out there that has been where I am. My son is has asd and ocd fear of contamination. To the extent that he avoids the toilet the downstairs won’t touch anything unless it’s clean. He only stays in his room.

It’s severe won’t leave the house unless forced and I am helping him with all the decontamination when we get back and then he still gets distressed. Basically no help no one to one intervention from education health or anywhere for 2 years.

He has his covid jab and on that day asked to get a drive through and left house first time in two years. I have made steady progress since then with no help or support.

He was only weeing once a day now he goes twice. He wasn’t cleaning teeth regularly now he I. He went to a shop with me first time in over two years and has-been on a dog walk.

I sent an email asking questions about care about therapy and his entitlement to it. And I have also been chasing education who supposedly started an ehcp re assessment in sept2021. I have had radio silence from all parties.

I have now had a phone call from cahms saying there will be a big meeting and that the consultant and all involved have had a meeting and a referral has been made to social services.

Can anyone help. My fear is that they are going to hospitalise him and they are nit going to try the change of medication or therapy in the community before this which was planed.

I am broken and know that being put into hospital now will destroy him and I am just making progress with him and reaching him. Nobody is listening and nobody has actually spent more than 5 mins with him. He has had three face to face encounters for no more than 5 mins over the past 2 years. What do I do ?

[Forum Moderators]

Hello:

Forum moderators here – your son is very fortunate to have such a caring parent – but we’re sorry to read what you have been going through,

We strongly suggest that you phone (or email) our OCD Action Helpline. Our Helpline provides confidential support for people with OCD and their parents too. They may be able to provide you with information on how you can get help in your situation. Contact our Helpline by:

• phone: 0300 636 5478
• email: support@ocdaction.org.uk

Also, the OCD Action website has resources for parents of children with OCD on these pages:

Children and Adolescent Mental Health Services (CAMHS): https://ocdaction.org.uk/resources/camhs/

The Carers page: https://ocdaction.org.uk/i-need-support/carers/

The Resources page: click on “I am a carer or loved one and want some resources”: https://ocdaction.org.uk/resources/#carers

We don’t know how old your son is but this page may be useful: “I am a parent of a young child”: https://ocdaction.org.uk/resources/i-am-a-parent-of-a-young-child/

Just please remember you’re never alone; OCD Action is here to support you.

Forum Moderators

[Forum Moderators]

Hello:

We’d also like you to know about this additional support OCD Action offers for you.

OCD Action Support Groups

Online Support Groups:

• Provide a safe and welcoming environment
• Allow you to connect with others and offer mutual support without judgement
• Are all peer led, assisted by a team of trained volunteers.

Who can join?

Anyone based in the UK and living with and/or affected by OCD or a related condition including:

• People who have these conditions, whether diagnosed or not
• Their parents, caregivers, partners and loved ones
• Students aged up to 25 in college / university/ other educational institutions
• Young people aged 16 – 17
• Young people aged 18 – 25

Types of groups

OCD Action offers specialised groups including:

• Pure O – General\Pure O – Intrusive Harm Thoughts
• Pure O – Scrupulosity & Morality
• Checking OCD
• Contamination OCD
• Perinatal OCD
• LGBTQ+ OCD
• Men’s OCD
• OCD for People of Colour
• BDD
• OCD & Autism
• OCD & Hoarding

What important details do I need to know?

• You can sign-up to a maximum of two groups initially. After attending at least once, you’re welcome to sign-up to another group
• Participation is easily accessible via Zoom, or
• If you don’t have internet access, we have a few phone support group places
• There is no charge to join
• Because of the high demand, please only sign up if you intend to use your place(s)
• To retain membership, you must attend a session at least once every three months

What are Navigating Services sessions?

As a Support Group member, you’ll be automatically be invited to monthly Navigating Services Sessions. Attendance is optional, and you’re free to opt out of the session mailing list at any time.

Led by our Helpline team, these sessions include:

• Information and support on accessing recommended treatments through the NHS and/or privately
• Opportunities to share lived experience of accessing support (for attendees or others)
• Answers to questions/concerns regarding recommended treatments and/or service provision

Want to know more about Support Groups?

For more information before you sign up:

• Email sign-up@ebtsupportgroups.co.uk
• Call 020 7253 5272
• See our website: https://ocdaction.org.uk/online-support-groups/

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