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Daughter let down by CAHMS.

5 replies

Wack · 05/12/2021 14:27

I had a phonecall from my ex this morning asking me to go round as there was something she needed to discuss with me as a matter or urgency, I set off and was there within 5 minutes.
She only calls when her ass is on fire, so it must have been important. I was handed a coffee as soon as I got there and we sat down, I asked what the problem was and although what she announced kind of floored me, but within seconds it made perfect sense and I was is a way, relieved. It turns out our 18 year old daughter has been diagnosed as being on the Autism spectrum. Our son who is 21, was diagnosed when he was 4, but even then CAHMS were not very good with us or a great help, so we gave up on them.

Our daughters behaviour changed when she started getting bullied when she went to secondary school and all the friends she had through nursery and junior school turned against her, it got to the point where we had to change school, but word got around and it started again, so after meetings with the police, school teachers, governers and an representative from OFSTED, we were getting nowhere, so we pulled her out and asked to have school work sent home and we would help her along with a tutor days a week. Following this, she had several doctors visits and referals to specialists and eventually CAHMS. Her first visit to CAHMS was when she was 13, several more visits followed, but eventually, they decided there was nothing wrong and they discharged her. Since then, she's become reclusive, not wanting to go out, panics if there are more than 3-4 people gathered together, won't go into certain shops, reluctant to engage or talk to people and generally not very communicative. As anyone with children on the spectrum or work within the spectrum, you know how challenging it can be.

We carried on trying to find help for her, but we were thwarted at every turn until a lucky encounter at a Costa a few months ago when she and her mother got talking to a woman who's daughter was on the spectrum. After changing phone numbers with the woman and a couple more meetings for coffee and chat, they were given the details of who to contact for help. Since then, things have moved on greatly and my daughter is now starting to get the help she's been very much in need of.

But what has really got our backs up, is the fact that paperwork sent from CAHMS clearly states that they consider her to being on the spectrum, even though they said she wasn't and couldn't help her/us anymore. What's very annoying about this, is the date the report was written, November 2017, when she was 14 and before they announced that she was in no need for help! There's also going to be an investigation launched to try and find out why our daughter was denied help at the time and why our local doctors and those who should have been notified had not been told of her diagnosis, so that she could have been helped earlier.

We are a lot happier now knowing that we have a diagnosis for her and she is too, knowing that there's a reason for the way she is and that help is now happening. What makes this worse and makes me feel very guilty, is the fact that I was diagnosed as being on the spectrum in March when I was 60. I've been told that Autism/ADD/ADHD/Asbergers and the other conditions that make up the spectrum are not hereditory, but I wonder if I've passed it onto my son and daughter. I feel truly awful.

It makes me wonder how many more have been misdiagnosed and/or fallen through the cracks. She should have had help 4 years ago, but as she hasn't, she's had 4 years of frustration, very sad times, anger, depression, self doubt, low esteem, nightmares and very bad thoughts to the point of self harming.

CAHMS, not fit for purpose.

OP posts:
SuperLoudPoppingAction · 05/12/2021 14:36

Camhs are absolutely dreadful in my experience.

But who told you being autistic wasn't hereditary? It isn't linked to one gene but it definitely runs in families.

Jamesworks2hard · 06/12/2021 00:09

But who told you being autistic wasn't hereditary? It isn't linked to one gene but it definitely runs in families.

I was told by my own doctor in the spring of this year.

SuperLoudPoppingAction · 06/12/2021 09:14

There's quite a high proportion of doctors and practitioners working with autistic people who rely on quite outdated information.

Whether it is hereditary or not, there can be lots of advantages to an autistic person parenting autistic children - maybe more insight into things your children might find difficult, more ideas about coping strategies etc.
Please try not to feel bad about your being autistic and having autistic children.
You only just got your diagnosis so you couldn't have known.

I personally found it really hard to access camhs for my children as I found them quite unreceptive to making accommodations for me as an autistic parent. Part of the diagnostic process requires that I am there, answering questions, but they don't make it easy at all.

Wack · 08/12/2021 21:27

Thank you all for the replies. The more we look into our daughters condition, the more of a nightmare we find. When our son was first assessed, it seemed like a straight forward procedure and we were on the system and obtaining treatment/help within no time.
This was 16-17 years ago and we wonder if new contraints and operating methods have come into being.
Just a case of keeping our finger on the pulse and our ear to the ground.

Thank you.

OP posts:
GoodnightGrandma · 08/12/2021 21:31

There is autism and dyspraxia running in DH’s family.

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