Devastated over autism

[JosephFrancis]

I posted this in SN chat but I've had no responses and I need someone to talk to.

I'm not devastated because my 15 yo has autism. But because I have been pushing since she was six for someone to notice, someone to care. Instead she's been told she's an attention seeker, a trouble maker, pathetic, selfish, immature etc by schools and even by CAMHS! They diagnosed her with depression and anxiety and put her on medication at NINE FUCKING YEARS OLD. She went through an assessment at eight and the result was that the assessor said she's not autistic because she makes eye contact, she's just intense and irritating. That's on official paperwork! I complained, insisted it be redone, they used the same assessor and she recorded that she thought I was the problem. It took two years for that to be removed from the paperwork.

She's just had to be in a residential programme for a week to assess her neurological condition for any triggers. I had to provide them with as much CAMHS paperwork as I had, and give permission for them to liase, but I didn't tell them anything about my concerns about her possibly being on the spectrum. I thought if they see it, then they see it and that's the last chance really for her to be seen for who she is, but I didn't want to influence them.

The child neuropsychologists who were observing her said they noticed lots of red flags so they had been through her CAMHS records as she's so clearly autistic that they were stunned that she wasn't given a diagnosis seven years ago. As far as they're concerned, she surpassed the threshold in the assessment she had at age eight so they have no idea what the fuck went on there, basically.

They said she's extremely close to mental breakdown, she's got sensory processing disorder, pretty serious executive dysfunction and she's mentally a mess, basically. The only place she's even close to ok is at home and that's because we know her so well, everything has been worked around for her to cope. They've got hold of local CAMHS and said that she needs to be officially diagnosed by them as close to immediately as they can manage, that she doesn't need an assessment because they both have given their professional opinion, they just need her psychiatrist to concur. They're really on the ball with it and they're convinced that her neurological disorder is at least partially the result of severe and chronic stress due to unmet needs.

I am devastated. For her and all the years she's felt out of step and set apart from her peers and her world with nothing more than a "you're such hard work, it's ridiculous" theme to go by. For me, and all the years I've been looked at as a neurotic, rubbish mother who wants her child to have a label; all the times I second guessed myself. For all the time I fought against schools and other professionals and even my own family for the way they weren't respecting her needs. For the damage- all the fucking DAMAGE that's been done by not diagnosing her!! They told her and they told me that she was typical and the problem was with my inability to parent someone with a strong personality. Is being unable to tolerate the sensation of a hairbrush or a shower or even a toothbrush a strong personality?? Is going into total meltdown because she could hear everyone's pens scratching out of rhythm in an exam just the result of a strong personality? Needing to be carried out of supermarkets because she was in a blind panic over the number of people there?? 😭😭😭 And it didn't matter that I have other kids who have the same parenting and are absolutely fine!

Do I have any recourse?? She should have got a diagnosis almost half her lifetime ago. The record of the assessment and the markers they used shows she should have. They put her on antidepressants before she was ten and she didn't need them, she needed extra support in school and reasonable adjustments. The impact of all of that cannot even be described

I am just so fucking upset. 😭😭

OP,
That is heartbreaking. I have two with ASD.
I think you may have a case for medical negligence claim. Most medical negligence solicitors operate on a no win no fee basis too…it’s just a case of approaching some with your evidence to see if they think you have a case.
Then you could get your DD some compensation for her suffering.

This is a distressing story and sadly too common, and I am sorry you have had to go through it.

I agree that you can complain or speak to a medical negligence solicitor. But i would also say these take a lot of mental resources and time, which you might just be too drained for. Especially if you still have some fighting for support to do. So dont beat yourself up if you dont have energy for both. But if you do, go for it. It might help pay for some much needed OT and counselling.

As an aside, my son was diagnosed at an earlier age but still 6 years after i raised it. and although support was eventually put in place it has been a long journey he still needed anti-depressants.

The health visitor said, "oh, don't be one of THOSE mums, for Christ's sake!"

Same!

At the time, in our area we had a 3 year check with the HV.

I remember speaking to the HV about stuff that worried me. I have an older daughter, my friends were all having children, and DD was very different. I was told not to be ridiculous. HV did refer us for SALT but we were discharged almost immediately.

I try not to think about it very often, but now and then I’ll lie awake stewing and just feeling so helpless. It shouldn’t have got to this point.

And if one more person says ‘just’ I think I may start punching and never stop. There’s no ‘just’ about it.

I don't know how to say this without possibly causing offence. None is intended and I'm trying to put it in context.
My dd is slightly older but was diagnosed at 9. It's not been an easy ride even with that success. She too ended up on Sertraline because she was so anxious. We had to fight to get her into a suitable mainstream school. The one she was given handled her appallingly at their open evening. The 'better' school led to a breakdown but we got an EHCP and it has been far better since then.
I'm angry on your behalf that your dd has been undiagnosed and labelled for all this time but even with a diagnosis, it's not necessarily easier on my dd. Funding isn't available for help. You'll be referred to overwhelmed charities or spend hours and hours and ££ trying to access help. I felt very desperate at many points.
Good luck with whatever route you go down but I suspect you'll need that anger to fight the battles around support rather than looking backwards.

My dd10 was diagnosed last year so I haven't had your diagnosis struggle but I can totally identify with looking at pictures of when she was a happy little girl with her blonde curls without a care in the world and now she is an anxious, scared and very unhappy one, it's devastating isn't it.

Sending hugs OP. My DD16 has always struggled and we've been repeatedly told by CAMHS it isn't autism. She is now incredibly anxious, out of school (no GCSEs) and a private child psychiatrist has said it's 100% autism so she is on a four-year waiting list for an official diagnosis.

To be fair to all of the professionals who have seen her over the years it is now much more obvious because post-lockdowns she has lost the ability to mask, as have many other autistic children.

I suspect that part of the problem is also the general ignorance of women's health that characterises medical research. Autism in girls is harder to diagnose so they don't invest in research, they just under-diagnose.

No advice, but I just want to say that I hear you, and completely believe you and I’m so so sorry you’ve had this experience.

My journey with my autistic son shares some similarities to yours and it’s thoroughly shit.

I hope you and her get the support you need now

I’m livid for you! 😣 So sorry that you have all been through this. Wondering if you’ve got grounds to take this further (legally) I know it won’t change anything but it will at least get answers as to why it was missed and acknowledgement from those who failed her. She sounds like my son (who is diagnosed ASD and aDHd) but has PDA profile which often is missed as doesn’t ‘look’ like typical autism. My heart breaks for you as I know this could have been us had we not got the right person assessing him.

It’s heartbreaking to read through everyone’s experiences. I just wanted to send a little hope to some of you that might feel hopeless at the minute. We have been through a very similar situation but I just wanted to say things can get so much better. Age 9 our girl was on anti psychotic medication, we were paying £200 an hour (borrowed money from family as no one would listen to us) for a private psychiatrist (not actually very useful other than for the medication and support with nhs diagnosis) We gave up on the system completely, but we worked as a family with her and while it’s been tough we’ve got to the point we’re she’s now in college and she is absolutely thriving. She goes to gigs, she’s just been away to see her sister who’s in her first year of uni I feel like we’ve got her back. We’ve had pretty tough times along the way but we’ve got through them and I cannot believe how far she’s come. On the other side of this if do believe CAMHS doesn’t support autistic females very well at all. My daughters been referred 5 times but never got any support even after suicide attempts. We’ve been told it’s down the the autism team, something that doesn’t even exist where we live. Any way I’m doing a study on it at the moment if any one is interested in sharing their experiences I have a thread on the NFP surveys page.

Can I PM you about the anti-psychotic medication? I don’t want to hijack this thread

Of course 😊

I absolutely echo this; I tried unsuccessfully for my dd to be diagnosed age 5-6. I was marked down as an 'anxious' mum, contributing to her extreme sensitivities - I can just imagine what the school will have said to the person from the LA who went in to observe her 😒. I then, to my utmost regret, gave up, until she developed tics, ocd, anxiety, then a neurological disorder, between the ages of 10-12. We've been on CAMHS waiting list since then for an ASD assessment and for support for her anxiety. She's now 15. Even a year of self harming, and our GP writing to ask them to see her urgently, hasn't progressed anything. Piecing so many things together I can now she she has always had sensory processing disorder too. It breaks my heart how much she has masked/struggled with throughout her school years.

Like a few others I want to try and give you something positive after such an awful journey to diagnosis

DD has had a journey like yours, possibly even worse. It took from the age of 6 when she first had suicidal ideation and anxiety so severe the GP wrote an actual sick note for school until a month before her 16th birthday to get to final diagnosis

DD. was gas lit by camhs therapists over anxiety and depression which led to a diagnosis of PTSD along with every spectrum diagnosis and then some

We exited mainstream education at 12 with the help of an EHCP that I had to obtain because SENCO’s refused to help and did all her secondary education at an Internet school that saved her life quite literally

There were odd heroes on our journey including the autism team that finally diagnosed her but then promptly disbanded

However, hanging on my wall is a photo taken this September. It’s one of the things I’m most proud of, not a sad first day at school picture (and there were some corkers) but a first day at University picture with both my neuro diverse kids in that recognises just how far they’ve come

Today DD is blossoming, turning into the young woman WE could see through all the hurt and pain. With friends, a career path lecturers who recognise her potential and a real smile on her face NOT the mask that she wore for so so long.

DD will always have her own challenges in life but she knows that we believe she can do anything and now she’s doing just that

I'm so angry on your behalf. If you have it in you then please do complain, about everyone who missed this. I'm so sorry you've both been through this.

I know this isn't going to help but having a diagnosis won't necessarily have made any difference to the pathway. In girls especially asd is often observed as mental illness such as depression, anxiety etc. my dd was diagnosed at 2 but still had to fight with camhs. She went on meds at 12.

Lack of an autism diagnosis will not have damaged her, lack of proper support for her mental health issues is the issue for your dd, mine and so many more.

Interestingly, now an adult, DD's psychiatric team (she has complex issues) isn't sure about the autism diagnosis, they are thinking it's bpd instead. I'm not convinced as her df is just like her, and is autistic, clearer in men.

Btw my dd is at university, please have hope

@gogohmm I don't want to derail the OP's thread, but asd in girls and women is often misdiagnosed as BPD by psychiatrists et al. And as far as I am aware, BPD doesn't present in small children but develops during adolescence so if your DD was diagnosed at 2, then it's almost certainly ASD rather than BPD as she has had the traits her whole life.

@JosephFrancis I was diagnosed as an adult in my early 30's, I had a really supportive family growing up which made all the difference. You supporting her will have helped your DD so much more than you can imagine.

That's so awful. Had similar with being told DD was just headstrong, her social development was behind due to Covid etc until she had a meltdown in class. Still been told that despite the urgent referral will be a 12 month wait to be assessed.

No advice, just wanted to say I feel your pain. PP who was told "don't be one of those mums"... FFS one of those mums tuned in to the needs of her children?! Been there, DD has scars all over herself on the outside and we are both scarred forever from the emotional trauma.

She already has an EHCP and has had for years, all based on anxiety and a medical condition with her knees, I know the support is incredibly rubbish and that schools will
a child's allocated funds for other things. It's not about the support that would cost the local authority anything for me. It's about how my daughter hasn't understood herself or why she's so out of place. Why she can't fit in. Why she doesn't understand the other girls, why she isn't interested in relationships, or why she has such hyper intense fixations on things. She hasn't been able to join the ASD support groups in her school and possibly find her people. She's been adrift and she's blamed herself and she's blamed me for not helping her to understand the world better because there's no reason why she shouldn't, "the doctors said so!" She would have been so much better off if she'd been able to think "this is why I react this way. I am not strange. I do belong. I'm just autistic."

She's been suicidal and she's self harmed because there was nowhere she fit and nobody understood her. She was taken off the Prozac they put her on after 3 years because it was worsening these thoughts. She wasn't any lower in mood off of them and they wouldn't/couldn't explain why.

I fully expect she will need antidepressants, anti anxiety meds etc, but they put her on them without listening to me and without listening to her. The number of times I've listed all her issues and said "these CANNOT all be stand alone issues, they must be connected, it makes sense." But I'm a neurotic mother who wants a label, not a desperate woman who wants her child to have support and understanding. 😡😭

Was it FND? The neurological disorder. FND?

I'm sorry to hear your story OP, of course you are devastated, you've lost years because you've been dismissed by so called professionals.

These guys might be able to help you if you wanted to pursue negligence, or at least signpost you in the right direction -

www.kids.org.uk/about-us

If you have the energy to do so of course! If you can, it might give some solace if you can get the chance to tell/show them, you were wrong and you failed us.

And bloody shame on them.

So sorry, this is horrific, lessons need to be learnt. No idea if there is scope for recourse/an enquiry. Is there any scope to go public (anonymously, if needed), for example by approaching a journalist such as Georgina Fuller.

OK it landed badly. I hoped it wouldn't. I'm going to PM you.

^It's about how my daughter hasn't understood herself or why she's so out of place. Why she can't fit in. Why she doesn't understand the other girls, why she isn't interested in relationships, or why she has such hyper intense fixations on things. She hasn't been able to join the ASD support groups in her school and possibly find her people.*

Yes, I agree.

We have constantly been told that she’s fine, there’s nothing wrong, it’s ‘just’ anxiety, she needs to relax, Mum is anxious, etc. etc.

She knew how she felt but was constantly told she was wrong, must be mistaken, that the things that were happening and were very real weren’t really happening, we misunderstood, she should try to stop worrying

Her relief was palpable when we walked into that appointment with the consultant psychiatrist and half an hour in he said, “I think you have autism, why haven’t you been assessed?” Someone recognised it, someone listened, someone believed her, someone helped.

Shes been treated like she’s misbehaving, like a freak, like a nuisance, like she’s attention seeking, like she’s a liar when all along she had this condition and couldn’t help it.

Being able to say “I have autism, this is why I am like I am” has gone some way to answer the questions she’s had for years.