Welcome to Navigating Public Systems - sharing what we've learned

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.

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

Thank you so much for this amazing response. It's the most helpful advice/guidance I've received to date!
I should have said, school are being very helpful and have offered counselling, reduced timetable, 2 x Ed Psych observations and other adjustment. They have told me they are putting things in place as if she had a confirmed ASD diagnosis, even though she hasn't. However I don't know if there would be any additional support we could expect if we had a formal diagnosis? Or if we should be grateful for the support she is getting currently? I think for her own mental health it would help her to understand why she feels the way she does and why she needs self harm to cope.
I will get started on looking into the other suggestions you've made. Thank you again

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

I have been on cahms waiting list for nearly 2 years been to see them once last year and was told my daughter would be on a 2 week wait as she is an "at risk" child, but heard nothing since. My daughter continued to self harm and the battle has been brutal back and forth from school when all they offer her is counselling which isn't helping as the lady in my daughters opinion is very judgemental. Today we went to a whole new level and the school are not very concerned as she has written how she would now take her own life. So now they actually woke up and said yes this is a problem she is a risk (even though I have been telling them this for months) we had to sit down A&E for hours today and was put in an area that I don't even know, have never seen this part of the hospital and it even scared me some of the things we witnessed so I can't imagine how my daughter felt. They brought in Interact (an outside company) who done a mental health assessment on her. I feel like in just 1 day going to A&E i got way more then I have in the last 3 years of battling to get her help. To say our system is broken is an understatement and to be honest I feel physically and mentally drained that I just wanna cry I honestly have no idea what happens next but I hope that it helps. Sorry for the long post its helped to let it all out.

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

Hi there,
I'm so sorry to read your experience... when I read it I could relate to everything you said as if I'd written it myself. You might have seen my earlier posts on this thread about my experience. I get how desperate it feels and how lonely.
The Speek team are so supportive and their advice is amazing. They are proof that although it feels like you are alone, you're not.
It's horrific that you have to end up in A&E just to be listened to. We have experienced the same thing. In the last few months I have started calling and emailing camhs every time there is an incident of self harm. I dont know if it's coincidence or not but last week when I took my daughter in for a crisis appointment after another incident, they told me I am now number 7 on the list and should be allocated a key worker within the next few weeks! I cried as it was so unexpected...we've waited nearly 2 years to get to this point and I had heard rumours it could be 4 years before we were seen so this seemed like such a huge breakthrough! A week on from our visit and the doubt is creeping back in and I'm wondering if we will get that call or not .... all I can say is it might have helped that I started to be a nuisance, so could be worth a try if you haven't already been doing this. And in the meantime look after yourself. I really hope you and your daughter get the help you deserve ️

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

Thank you for your reply, as much as it isn't nice to hear other children going through this is nice to have someone know how you feel and the struggles. I got a call from cahms yesterday telling me I would receive a letter for a 5 day check in as we went to a&e a few hours later I get an email with an appointment.... 2nd March 3 weeks later how is that a 5 day check in the system is so over loaded and broken its terrible. I do hope you get that call and are seen soon its so hard as us as parents can only do so much and we are not professionals who know what to do, but you are right speek is such a good support and I am so glad I joined. I spoke to my daughters deputy head last night and we agreed a reduced timetable maybe worth a shot as my daughter is year 11 and with exams looming she gets herself in such a state, its so overwhelming, Let's hope for results for us both and our kids can finally get the support they need ️