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Speek Clinical

Thank you for sharing that - we completely agree. I also want to gently flag that you are not being a “nuisance”; you are advocating for care that you and your child absolutely deserve. There is a strong evidence base supporting the importance of timely, appropriate support in situations like this. The system is struggling AND you deserve better

Speek Clinical

Dear new members,

Welcome to Speek Ally, a space for you.

This forum is a space for parents and carers to ask questions, share experiences, seek advice, or simply just vent. You can post anonymously and say what you need. Just please be kind and respectful and protect identity!

Our clinical team are here and may occasionally contribute or clarify where helpful. However, this space is primarily for you — to connect with other parents who understand what this journey can feel like.

You don’t have to have the “right” words. You don’t have to have it all figured out. You’re welcome here exactly as you are. Post away!

Best wishes,
Speek Clinical team

Speek Clinical

Hi Katie,

Thank you for sharing such a powerful and painful message. We couldn’t agree more with your statement that the system is broken. Families like yours are carrying an enormous burden, and it sounds like yesterday was incredibly stressful - especially after such a long period of not feeling heard or properly supported.

Sadly, this is something we see and hear about far too often at Speek. Many parents here will recognise that feeling of fighting for help. This is exactly why Speek was set up, because families and young people deserve better, and we want to be part of changing this crisis.

In terms of the immediate support they gave, Interact is a short-term crisis and assessment support service linked to CAMHS. You can find their details here:
https://www.nelft.nhs.uk/interact-baking-and-dagenham-camhs/

When you meet with them, it may help to ask:

What specific support can you provide to my daughter right now?
Given how long she has already been waiting, what is the realistic timeline from here?
How will you support us to manage risk safely at home?
How will you communicate and coordinate with her school?

These are all considered best practice questions. As you’ve experienced, what is outlined as best care is not always what families actually receive, but you are absolutely within your rights to ask and push.

While waiting, is there another member of staff at school (pastoral lead, SENCO, safeguarding lead, school counsellor) who could provide some regular wellbeing support? Instead of the unhelpful one.

I hope CAMHS are able to step in with more consistent support very soon. In the meantime, we are here with you, whether that’s helping you prepare for meetings, think through next steps, or simply offering space to be heard. Importantly, please don’t forget about yourself in this. If you’re feeling lost, drained, or on the verge of tears, that makes complete sense. Prioritising your own rest and support is not selfish — it’s essential. You are carrying a lot. What can you do this week to help with this? Take a nap, take a bath, go for a coffee and a treat, listen to some peaceful music. Some self-sooth and distress support skills will be really useful here.

To any parents reading this, are there other parents here who’ve navigated Interact or long CAMHS waits who might be willing to share what helped them?

You’re not alone here in Speek Ally

Best wishes,
Speek Clinical Team

Speek Clinical

Thank you for clarifying how the school are supporting your daughter, this is fantastic to hear that she is already receiving some very helpful support. It is reassuring and shows that they are responding to her needs rather than waiting for an assessment to take place, which as you are aware can take a very long time.

In terms of whether a formal diagnosis might bring additional support, this can vary quite a lot depending on your local service provision. For some families, post-diagnostic support is relatively limited; for others, it can open doors that are harder to access without a diagnosis.

From health services perspective, a diagnosis may lead to:

Access to post-diagnostic psychoeducation (sometimes group-based, sometimes individual), helping both parents and young people understand autism/ ADHD and how it affects them and how to meet a persons needs with a diagnosis.
Clearer pathways into neurodevelopmentally informed mental health support (e.g. autism-adapted therapy, CAMHS input where mental health needs are present).

However, it’s important to be honest that in many areas, NHS post-diagnostic support is quite variable and sometimes minimal. Some families receive only a diagnostic report and signposting. This doesn’t mean a diagnosis lacks value, but it does mean expectations need to be realistic and shaped by what your local area offers.

Within education, a diagnosis can:

Strengthen the case for ongoing and consistent reasonable adjustments, particularly as demands increase over time
Support applications for exam access arrangements and any transition planning (e.g. progression through school years, different teachers, move to sixth form/ college etc.)
Help if an EHCP is being considered in the future (though a diagnosis alone doesn’t guarantee one)

That said, as Olivia mentioned in her previous reply, schools are legally required to meet needs under SEN Support without a diagnosis, and it sounds like your daughter’s school is already doing this well.

Additionally, as you noted, having a diagnosis can also help your daughter make sense of her experiences, reduce any self-blame experienced, and support her mental health. This can be especially important when coping with overwhelming feelings or self-harm, giving her a framework for understanding her emotional and sensory responses.

You’ve raised a really important point about your daughter’s mental health and self-harm. For many young people, particularly autistic young people, self-harm can function as a way of coping with overwhelming emotional, sensory, or cognitive states. Therapy can help her to understand why her experiences feel so intense, and building alternative ways to regulate and express distress. A diagnosis can sometimes support that self-understanding, but this therapeutic work is important and can begin regardless of diagnosis and in line with when she feels ready.

In terms of advocacy and navigating education, if you haven't already I would strongly recommend contacting SENDIASS (Special Educational Needs and Disability Information, Advice and Support Service). SENDIASS services are independent, free, and available in every local authority. Many parents find SENDIASS invaluable. They can:

Help you understand your daughter’s rights around SEN support
Support you in meetings with school
Advise on EHCP processes if that ever becomes relevant
Provide guidance and reassurance around advocating without needing a diagnosis

Ultimately, it’s absolutely ok to hold both positions at once: to be grateful for the support your daughter is receiving now and still consider a formal diagnosis for longer-term clarity, protection, and self-understanding. You’re clearly advocating thoughtfully and compassionately for your daughter, and that in itself is a major protective factor for her.

Please do continue to ask questions here. You’re not alone in this, we recognise it can feel very isolating at times.

With best wishes,
Dr Imogen Thynne

Speek Clinical

Apologies my reply is long:

School support

Schools often push for ASD/ADHD assessments because they see unmet needs, but they should still be making reasonable adjustments now, diagnosis or not.

You can ask for a conversation around:

SEN support
A pastoral plan around her queried ASD/ADHD needs and self-harm experiences
Reduced timetable or safe space access if needed

An example statement could be:

While we understand and agree that an ASD/ADHD assessment may be helpful, we are facing unprecedented wait times and we are concerned that X’s needs require support now, regardless of diagnostic status. We would like to request a meeting to discuss what reasonable adjustments can be put in place now under SEN support, while assessments are ongoing. In particular, given her self-harm, we would welcome a conversation about a pastoral support plan that reflects her current needs, including adjustments linked to her suspected ASD/ADHD profile. This might include access to a safe space, flexibility around lessons or transitions, and consideration of a reduced or adapted timetable if appropriate. It would be helpful to create a safety plan with her form tutor. Our priority is ensuring that she feels safe, supported, and able to access and engage school in a way that protects her wellbeing while we await further assessments. I would welcome your support here.

Choosing a private provider

When looking privately, you are more than entitled to shop around to make sure you find the best for you. You might want to do it in person, online, with a certain therapist.

Email providers and ask:
“Will your assessment be NICE-compliant and NHS-recognised?”
“What professional background does the assessor have?”
“What pre/post-diagnostic support do you offer?”

·Avoid very fast, cheap, or “questionnaire-only” assessments, those are the ones most likely to be rejected.
Accredited sites like the National Autistic Society are a good place to look: https://www.autism.org.uk/autism-services-directory/p/private-child-autism-assessment

You ask an all too common question, long NHS waits, mixed messages, and lack of support push many parents into exactly this position where they feel private is the only option. Trust your parental instincts, if waiting is making things worse, seeking private clarity and support can be a protective step, not a risky one. It should not remove access to NHS care. If you are concerned that camhs express that duplicate care is a barrier to her getting support, she can end private support. I hope this has been of some help and please don’t hesitate to ask us more questions here, this is what we are for at Speek. Please remember to look after yourself in this journey, it sounds like it’s been a long and difficult wait for you both.

Best wishes,

Dr Olivia Collier

Speek Clinical

Thank you for your reply, and I am really sorry to hear how difficult it has been for you and your daughter. Unfortunately, what you describe is very common and many families just like yours are reporting feeling lost, overwhelmed and waiting significant lengths of time. The government is currently conducting a review to investigate exactly this. You are clearly doing everything you can to help her but are not receiving the support you both deserve.

A few points that may help (continued in two posts)

Private assessments and NHS recognition
Private ADHD diagnoses are generally recognised by the NHS, provided they follow NICE guidelines, are conducted by a specialist, and include comprehensive documentation. However, the NHS clinician or team will make the final decision on treatment and may require their own assessment or shared care agreement for NHS-funded medication. A private diagnosis doesn't bypass NHS waiting lists for treatment but can initiate the process, with a private specialist often writing to your GP to establish shared care for prescriptions.

Key Points to consider:
• NICE Compliance: The diagnosis must meet the standards set by the National Institute for Health and Care Excellence (NICE) guidelines. These are CG123 for ADHD and CG170 for autism
• Qualified Clinician and registered with appropriate body: The assessment must be done by a specialist (e.g., psychiatrist, specialist nurse, or psychologist).
• Gold-standard tools must be used (e.g. ADOS-2, ADI-R)
• Detailed Report: A comprehensive report with full clinical history, developmental history, and observer reports is crucial.

For NHS Treatment (e.g. Medication/Therapy):
• Shared Care Agreement: Your private specialist can write to your GP to set up a shared care agreement for NHS prescriptions, this can help cover costs etc.
• GP Discretion: Your GP can refuse to prescribe medication based on a private diagnosis, as the NHS clinician takes clinical responsibility. Therefore if medication is prescribed another assessment may be done by them.
• Reassessment: Some NHS services may still conduct their own reassessment to confirm the diagnosis before starting any treatment but the private report can usually be used if done well.

Right to Choose vs private
• Right to Choose assessments should be fully NHS-recognised, however waiting lists are still be very long, and some services can range to 18 months+ in high demand areas. It might be worth contacting your local area to find out approximate wait times
• You could choose to do a hybrid approach, have a private assessment now for your own clarity and seeking support now, while staying on CAMHS/Right to Choose lists for NHS follow-up and medication if needed.
It is always worth staying on NHS services due to savings and right to care

3.Getting support now
It's clear that school have pushed for a diagnosis, which can be very important and helpful, but you don't need to wait for one to access support. There is help that can be put in place now, pre-diagnosis, which can make a real difference for your daughter.
What will help her most right now is support focused on:

Self-harm behaviours
Any ADHD/ASD related difficulties identified
Any mental health difficulties
Any support needed at school to maintain engagement and wellbeing there

A therapist experienced in neurodivergent adolescents and self-harm (e.g. DBT-skills based, or neuroaffirming therapy) can be hugely helpful even without a diagnosis. Many clinicians and services work with children with queried diagnosis.

Self-harm support
• If she is actively self-harming, CAMHS should be offering some level of support even while awaiting neurodevelopmental assessment. If that hasn’t happened, it’s reasonable to:

Ask for a CAMHS review or escalation based on risk (this make take time depending how busy they are)
Go to your GP and state the duration of self-harm, your concerns and any and current risk. Please note this is a common experience at the moment so there can be a chance you feel invalidated by GP's response, this is not acceptable but can happen.
If things escalate or you’re worried about immediate safety, always go to your A&E or contact the local crisis team. You can see our crisis numbers for more detail. This should never jeopardise future CAMHS input.

Speek Clinical

If you've tried to get help for your child through the NHS, schools, or other services, you know how difficult and confusing it can be:

6-month CAMHS waiting lists. Schools that don't know how to respond to crisis. Being discharged before you feel ready. Not knowing what services exist or how to access them

This space is for sharing the knowledge we've gained the hard way - so others don't have to start from scratch.

What parents are navigating:

CAMHS: Referrals, waiting lists, what to do in the meantime, discharge planning
Schools: Care plans, attendance issues, getting them to understand self-harm
GPs: Getting taken seriously, what to ask for, alternative referral pathways
Private options: When to consider them, what's the cost, how to find the right fit
Other services: Charities, crisis lines, online support, what actually helps

Why this space matters:

The system isn't designed to make things easy for you. Parents often have to advocate hard to get their child the support they need. That's exhausting, especially when you're already stretched thin.

But collectively, we know a lot. Parents here have navigated CAMHS in different areas, found solutions to waiting lists, worked with schools to create proper support plans, and learned what questions to ask.

Share your experience:

What's worked in getting your child support?
What do you wish you'd known earlier about navigating services?
What questions do you have about the system?

Your experience - good or bad - could help another parent. And their experience might help you.

The Speek Clinical Team

Speek Clinical

We hear it all the time from parents:

"I'm exhausted, but I can't stop.", "I feel guilty doing anything for myself.", "Everyone keeps telling me to look after myself, but how?"

If that sounds familiar, you're in the right place.

The truth about parenting through this:

Supporting a child who self-harms is one of the hardest things you'll ever do. The constant worry. The emotional rollercoaster of good days and bad days. The loneliness of carrying something most people don't understand.

You're allowed to find this hard. You're allowed to be exhausted. You're allowed to struggle.

This space is for:

Talking honestly about burnout, fear, and overwhelm
Discussing boundaries - with your child, your family, yourself
Sharing small acts of self-care that actually help
Supporting each other through the hardest parts
Creating some space to focus just on you and ways to help

What we've learned from parents:

Many parents benefit from a good support system and breaks. Not because they're selfish, but because you can't pour from an empty cup.

Taking 20 minutes for yourself isn't abandoning your child. Setting boundaries isn't being cold. Asking for help isn't failing.

Your well-being matters - not just for you, but for your child too. Research shows that parental mental health directly impacts children's recovery. When you're supported, you can support them better.

Let's talk about:

What does "self-care" actually look like when you're in crisis mode?
How do you manage the guilt of taking time for yourself?
What helps when you're running on empty?
How do you cope with the anxiety and constant worry?

You're not alone in feeling this way. And you don't have to figure it out by yourself.

The Speek Clinical Team

Speek Clinical

If you're here, you're probably looking for answers to some really difficult questions:

How do I talk to my child about self-harm? What should I say when I see fresh cuts? Am I making things worse? How can I actually help? How can I stop this?

These are the questions parents ask us most. And the fact that you're asking them shows how much you care.

This space is for:

Sharing what's working (and what isn't) in supporting your child
Asking questions you can't ask anywhere else
Learning from other parents who've been where you are
Getting guidance from our clinical team

Common questions we'll explore together:

Many parents come to Speek asking:

"Why is my child self-harming?"
"Does self-harm mean my child is suicidal?"
"Why didn't they tell me?"
"What should I say when I find out?"
"How do I help without making it worse?"

These are all questions we'll discuss here - with honesty, without judgment, and with the understanding that there are no perfect answers.

What we know from working with families:

Self-harm is rarely about "attention" the way some people think. It's usually a coping strategy - a way young people manage overwhelming emotions when they don't have other tools. Learning more about the function (the why) of self-harm, can help change how we understand and how we respond.

Your child keeping it secret doesn't mean they don't trust you. It often means they're ashamed, scared of your reaction, or worried about burdening you. Creating a space where it's safe to talk - without blame - is one of the most powerful things you can do.

Start a conversation:

What question has been weighing on you most?
What's one thing you wish you'd known earlier?
What's worked for you in difficult conversations with your child?

We're here to learn together.

The Speek Clinical Team

Speek Clinical

Hi, and welcome.

If you're here, it's likely because you're parenting a child who self-harms. We know how isolating that can feel. The fear, the questions you can't ask anyone else, the invisible weight you carry.

You're not alone anymore.

This forum is a space created specifically for parents of children who self-harm - a place where you can be honest about the hardest parts without judgment, connect with others who truly understand, and get guidance from our clinical team.

What you'll find here:

We've built four spaces, each designed around what parents tell us they need most:

Introductions (you're here) - Say hello when you're ready. No pressure, just people who get it.
Supporting my child - Share what works, ask questions about conversations, safety, and recovery.
Looking after myself - Talk about burnout, boundaries, and small acts of self-care.
Navigating public systems - Share experiences with CAMHS, schools, and services.

How to get started:

You don't have to share your whole story. Start wherever feels right:

Introduce yourself (even just "Hi, I'm here")
Read what others have shared
Reply to someone else's post
Ask a question you've been holding onto

A few things to know:

This space is professionally moderated by our clinical team
Everything here is confidential and anonymous
There are no silly questions
Lurking is okay - just being here counts

We're so glad you found us. Take your time, look around, and know that whatever you're feeling right now - other parents here have felt it too.

With care,
The Speek Clinical Team

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