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. 😭😭

I feel your pain, I had a similar experience with my son who is also 15.
you know your child and it is obvious there is something going on but I was told by his health visitor that he was spirited. He missed all his early milestones and struggled at almost everything but he was good at masking.
I pushed for a dx and finally got one in year 6.
up until that point he was the naughty kid who never got invites an had no friends. He is still a bit of a loner but is much happier now school understand his difficulties.
it is a constant struggle getting the support your child needs.

You poor and you and your child. I'm so sorry to hear this. I have no idea if you have any recourse I'm afraid, but I don't know what would make it better for you.

I'm so sorry. I hear you. I have found that the only thing to do as a parent is to try not to look back as much as possible and to gather all your strength for the next stage. But I honestly do understand, I had almost a year where I couldn't sleep because I was so angry about similar failings. You could put in a formal complaint via PALs. It takes a lot of energy but if it is taken seriously (mine was, but no guarantees) then it can help with the processing.

It's appalling the lengths parents and children have to go to and the damage that's is done in the mean time in order to get support and a diagnosis. Sorry that you've had to fight this battle but we'll done for hanging in there, as a result your daughter can hopefuly get the help she needs now and move on to adulthood with a much higher chance of happiness than if you'd been fobbed off at one of the many obstacles put in your way.

I feel your anguish too x I'm going through this with my 8 year old daughter and it's so difficult. Her sibling who is a lot easier than her was diagnosed at a young age but because she's female and not disruptive then it's obviously all in my imagination!
I honestly can't beg for anymore help but it's all being ignored!

Oh god, your poor DD. Diagnosing professionals have so much power and can be so judgemental, it's really amazing how little counterbalance the system has in case they get it wrong.

I was where you were for some years, although a diagnosis for my DC came while they were still in primary. I often thought about making a formal complaint about the professionals at CAMHS, school and social services that messed up, but didn't because a lawyer told me they'd close ranks anyway and it would be better to put my energy into the future. Ultimately, it is up to you to decide how much energy you have left to fight the system while you're dealing with the fallout today. But I think there's a lot to be said for closure through holding them accountable.

I didn't make any complaints and now they're in a school setting where they're doing okay and which took a frustrating process of it's own to get to, I can see why the lawyer advised this. But I also see the damage done to their personalities and confidence, and how that's now manifesting MH issues that they're likely to carry with them for the rest of their life because again it is proving difficult to get them the help they need. And how my relationship with professionals is still tainted by their judgements from years ago. The professionals I deal with now are more open, but the ones from before - who still hold gate keeping roles in CAMHS for example - seem to not have taken responsibility for their actions at all and the thought of having to fight them again for mental health support is sending me through the roof.

I don't know what would be best in your case but I'm wondering if the new professionals, who seem to be on the ball, would be able to take some kind of complaint/reparation process forward for you, as part of your DDs care plan from now on. Maybe not a whole legal complaint, but an internal investigation in what happened, who made mistakes, how they impacted your DD and how they should be prevented for the next poor child caught out.

I'm sorry that you and Dd have to go through this. Ds was diagnosed at 15, me at 46. Both of us have significant MH issues. Both have had an eating disorder ( Ds still has).
What can I say, apart from it's absolute shit not having a diagnosis earlier. There is no way to sugar coat it. Does it get any easier?.....for us it hasn't yet.
I've spent the 8 years pushing for support in education and health care for Ds and still am. And for myself, I'm struggling to process my diagnosis and what's happened in my life.

I hope that Dd can now get all the help and support that she needs. But I totally get your anger....it really doesn't need to and shouldn't be like this.

I am
it against anti depressants for adults. To administer them to a child is criminal and I can fully understand how upset you are feeling at finding out the medication was unnecessary.

I would push for an enquiry so as to prevent another child being medically abused.

I am not against anti depressants- that should read ^^

I’m so sorry OP. You sound like an excellent mum. I would put in a complaint about the original assessor, simply because she obviously isn’t able to do her job and that needs to be dealt with.

Beyond this, as a Pp said, the only thing is to acknowledge the crapshoot you’ve suffered, and then to focus on moving forward. I really hope things improve for your daughter and it sounds like they can.

@BobbyBobbyBobby I really don't want to derail the thread but just wanted to gently say that prescribing anti depressants for children is sometimes very helpful. My child had anti depressants and lots of adjustments in school and eventually specialist provision. In the end they had support from an excellent psychiatrist and I have no doubt that this was the right course of action. There is a lot of stigma about medication and children, but it is sometimes necessary (not to detract from OP's situation where they were given in place of other, much needed support)

I feel for you and your daughter so much. I am so sorry you have both been treated in this grossly inadequate way. But she is lucky to have you, lucky that you are aware, and above all else, lucky that you have created a home environment that works for her.

DS had the same until he was 12. But switched to a school taht recognised autism in all its forms, properly diagnosed and supported him. He was still friendless and unhappy for six out of his seven years there, but the school tried its best and that made alkl the difference. He left school with a good circle of friends and now lives independently and goes to uni nesarby so he can come home frequently. Aged 20 we are just beginning to unpick the mental damage and low self esteem that came from years of being told he was difficult, lazy, weird, stupid, uncool etc.

FWIW, despite still having big MH issues, he is building his resilience and self of his place in the world day by day. He's coping with uni, has friends and a girlfriend. I would never have thought any of this possible a few years agoa nd neither would he, as he was so isolated and down and struggling.

It is pretty much a full time job helping autistic children navigate their way into the world as themselves, but for us it has been worth the huge effort. One thing I only learned recently from DS was that he thought he was 'mentally broken'. He was so sure that all NT people sailed through life. It has helped his self confidence a lot to go through all the negative emotions and depathologise them. (Eg. Everyone gets angry/sad/humiliated/shy/confused/self-conscious/flustered sometimes, that's normal and fine.)

He was very very resistant to CBT and lots of soothing therapies but I kept offering them and discussing them and allaying his fears of them, and now he is saying they are very helpful and he uses them a lot. We work a lot on ways to self soothe, ways to calm the mind, build very fragile self confidence, notice the tiny steps of progress, healthy distractions - all that stuff. It's incredibly slow work (years not months before any progress shows) but it is worth it.

You sound like a brilliant mum.

It is extremely frustrating as I’ve been there but with less of a gap one assessment at 7 clearly not have ASD, another at 10 when he was suicidal and confirmed high functioning ASD but at the very top end so basically it was obvious. I hope you can get some support for your DD. I would strip her life back to keep her anxiety and stress to the minimum and get her on an even keel. Avoid shops, for my DS was going out to anything he didn’t want to do, eat only food they fee safe, if she can continue at school then obviously do exams in own room, extra time etc… when we stripped DS life back a lot of the sensory issues disappeared as anxiety levels were low. He is now at school with excellent SEN support although anxiety levels rising a bit and we need a bit of a reset. Best of luck, I found I was on my own after the diagnosis I am very sceptical about experts unless they have ASD themselves.

I’ve been through this more than once. It’s extremely hard your dd will be in a state of absolute trauma/shutdown and Will probably experience physical symptoms from the prolonged stress. It’s horrific that professionals missed this for so long and I’m so sorry you have to go through it.

When will your dd be able to come home or is she already home? It will be hard but she will need a long time to ‘reset’ after the trauma but it can improve I promise . Things won’t ever be perfect but they can be a whole lot better than they are now.

I am so sorry you've had this experience.

Sadly we've had a similar one. It's so shit.
When I see pictures of my incredible child on her first day if schol, so excited, curious, ready to get out there and start school, I want to cry big fat tears for how it's panned out.

OP I’m really sorry both you and your DD have had to go through this.

I understand how that feeling of all encompassing rage as to what has happened. Unfortunately I don’t think there is much you can do - or rather nothing you can do that will go anyway to making you feel better as to what has happened. You could write a letter of complaint if it makes you feel a little bit better.

Like others I’ve discovered that somehow you had to try and move on from the fury or rather channel it into trying to get support for your DD now. Easier said than done. I still wake in the night for hours about what has happened to my DS, the damage that has been done to him and me and my other child.

The other thing I’ve discovered is that even with a diagnosis and now an EHCP ( which I basically applied and fought for) he still doesn’t get the help he’s entitled to. He has ADHD and anxiety and the school seems incapable of accepting that his actions are not within his control so the damage continues.

Good luck with your journey ahead and again I’m so sorry you have all suffered so much.

I'm so sorry for your daughter, and you.

I would complain. I doubt it will have any affect on your situation, but it might play a part in forcing changes for other children coming up and facing the same challenges.

CAMHS is completely unfit for purpose and there needs to be a complete overhaul.

A lot of damage has been done, but hopefully having a diagnosis will help your daughter's mental health at least.

Love to both of you x

Oh I feel so much of this. I'm so sorry you have been dragged through this ridiculous system. My ds is 12, nearing the end of neuro pathway now, everyone fairly certain he will be diagnosed autistic. I've been fighting this since he was 4, raised concerns when he was 2.

The system in this country doesn't work.

Sending hugs, @JosephFrancis
You've had a bloody tough time.
My old GP (long gone, bless his heart) always said to LISTEN to a mother. He was & IS right. I'm so sorry you had such useless assessments. Hopefully things are looking up now.

I’m so sorry for your daughter and you.

We've just been through pretty much the same thing with my (now 17 year old) daughter.

First assessed at primary school at 7, then again at 11. Everyone telling me she was ‘just anxious’, that my anxiety was making everything worse, there was nothing wrong, she was a typical child, etc, etc.

She was always fine at school (er…hello? Masking?…). She was coping well at school, made good eye contact, she was quiet, compliant, so couldn’t possibly have autism. At home was a whole different story.

Then 2 and a half years ago she had a complete breakdown. Again with the ‘just anxious’/Mum’s anxious shizz.

She couldn’t leave her room without a panic attack, she’d always had tics but her previously mild/simple tics exploded, she started experiencing massive seizures, couldn’t eat without vomiting, and lots of other odd symptoms.

This was all blamed on the pandemic, told that lots of kids are experiencing anxiety and to go for a walk, do some baking, try not to worry.

6 months ago we walked into an appointment with the CAMHS consultant psychiatrist who spotted it straight away and put her straight on the diagnosis pathway. She still needs to do the official process which is now underway, but he’s 100% that she has ASD. He went back over previous assessments and couldn’t understand why she hadn’t been diagnosed years before. It’s all there in black and white, but as her school hadn’t noticed anything, my/her concerns were ignored.

Sadly it’s all too little, too late. The damage has been done. She has also been diagnosed with Tourette’s and FND. Her issues were always there, but anxiety and then the pandemic were the tipping points. Her current issues and symptoms may have never happened had we been listened to and proper support put in place all those years ago.

Photos of my bright and happy little girl pop up on FB memories now and then - the fun days at the beach, the look of wonder on her face meeting Father Christmas, her happiness when she first learned to jump her pony, her pride when she won her first rosette - I miss her, and I’m so angry about what happened to her - the years of masking and trying to live as a square peg in a round world, of trying to get proper help and support but being told it was all our fault.

This is devastating OP, I really feel for you and your DD. It’s terrible that the professionals who are meant to be trained to assess and diagnose let us down. My DS had his first appointment with a paediatrician after a 16 month wait, who discharged him with no further action. It was so obvious it was because he was engaging, eye contact etc (all virtual I might add as this was 2020!). He’d only just turned 5 so I know it can be trickier to spot, but lo and behold only a few months later he started acting up at school, and since then it’s taken almost a year to get him back on the waiting list; a wait which is minimum 2 years. He’s now 7 and still struggling at school. I will not let up this time, when we are eventually seen, and will make sure he has every assessment going. Your post has been helpful to me as I know I need to be belligerent. It’s wrong.

This is so sad to read and I'm sorry for her and your experiences.

Autism in girls is still so misunderstood.

I was diagnosed at 41 after a lifetime of being told I was depressed (I knew I wasnt) had GAD (I did but it was autism related) and, at 17, was 'diagnosed' as having an 'artistic temperament'!

I hope she finds the support she needs now.

Me too. It made me cry just to read this comment of yours because I feel the same. I look at her in her little uniform, the youngest in her year but so eager and happy, and I look at a sequence of her school pictures over the years and I can see the sparkle dying out and the smile disappearing and being replaced with stress.

I also raised concerns at age 2. Her temper was just explosive and for the most minor reasons, and there were just so many things the other kids weren't doing that she was, and so many things she couldn't cope with. The health visitor said, "oh, don't be one of THOSE mums, for Christ's sake!"
I just can't believe all the awful things she's had to go through at the hands of educational and medical professionals. I just can't fucking believe it.

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