Published on 12, July, 2020
Hello there, this is my first post and I have to say I'm still a little shell-shocked. My daughter has recently been diagnosed with ASD. She is 14 years old and this diagnosis, for me as her mum, comes 13 months too late. You could say it comes 14 years too late. I have always known my daughter to be different, certainly in relation to how she interacts with others and social situations. At the age of 7 she kept telling me she didn't want to live anymore. I took her to the GP and he referred her to CAMHS. After a 'comprehensive assessment' (ok?), and a little play therapy the 'professionals' concluded that my daughter was, "a highly sensitive little girl, with no evidence of any underlying medical condition". They also concluded that much of my daughter's difficulties were down to me, my parenting and divorce. Around 13 months ago, my daughter became increasingly depressed and anxious, not finding any joy in the activities, particularly with her family, that she had done previously. Her mood continued to deteriorate, to the point she then became very violent, towards me and her maternal grandmother. This violence continued for around 6 months and was unrelenting, often witnessed by her little 7 year old brother and my partner who felt helpless to intervene. What always followed after episodes of violence towards me, her mum, were episodes of self-harm which more often than not, resulted in visits to A&E. Wounds dressed and sent home to anticipate the next crisis. My mother became ill and needed medication, my father's psorasis became so bad he required admittance to hospital for treatment. I ran away. Only for 7 hours, but enough time for the Police to get involved, along with Social Services. Social Services were brilliant, but "couldn't intervene beyond a certain point because there was no safeguarding issue". They did set up respite for me and the rest of my family, and kicked my daughter's father's butt into gear, he started to have my daughter two weekends every month, which soon diminished when they removed their intervention. The violence stopped and the self-harm increased, as did the suicidal intent and depression. After checking out NICE guidelines I recognised that CAMHS had only carried out a psychosocial assessment not a comprehensive one. After being told by my GP to " read the bold section that says ring CAMHS" when I took my daughter to see him in crisis, I raced her to A&E again, only to sit there for 10 hours and be told that, whilst they believed she was a risk to herself, they couldn't admit her to children's ward because she did not have a 'physical' disability and CAMHS was "all I had". On my next visit to A&E I was prepared. Armed with my NICE guidelines and my diary I catalogued to them the Service's woeful failings to both my daughter, me, her mum, and her brother. I challenged them on their huge waste on resources when a comprehensive assessment would highlight at least a mental health diagnosis of depression. Finally I was heard, after 13 months of fighting a wonderful CAMHS doctor put his pen down last week after our meeting and said, "Your daughter has Autism, it has nothing to do with how you have brought her up, your parenting abilities or you as a mum". Whilst it give me huge relief it comes a little too late, my daughter is now on Prozac, my son hardly wants to live at home, prefering to stay with daddy or grandma and my partner and I try to pick up now the trainwreck that was once a happy and flourishing relationship. On a positive note, it does help explain my daughter's behaviour. She has been described by many around her, including her dad, as "selfish, crazy and 'nothing wrong, all teenagers self-harm, it's just evidence of on-coming womanhood'! Anyone else have a similar story to me??? Late diagnosis of ASD for their son or daughter????
Hi everyone,
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Thanks
Hi everyone i am just new to this site
I have read so much on this after being recommended to join by my daughters autisim nurse. I must say it has kept me going these past few months.
This is our story:
Since the day i found out i was pregnant with my first born daughter it was both wonderful and extremely scary. I went through all the normal stuff tests and scans but 1 night i was phoned by the doctor to ask me to come straight to the hospital the next day some of my blood tests where a bit concerning. I went to the hospital the next day with my partner and we were told the blood test that they do for Down syndrome came back positive. The next fews months where crazy with scans because i refused the Amniocentesis. Everything was normal and after a 22 hour labour our princess was here.
Everything was brilliant with a few hiccups, couldn't suckle at first but did eventually get it. She was growing great and life was wonderful. When my daughter was old enough for tummy time i did my best but unfortunately she would become very upset and panicked. She was a bum shuffler and a late walker.
I started to become worried she couldnt hear as sometimes she wouldnt hear us call her. Tests where done and i was told after months of nothing that she was just an ignorant child. Then came constant ear infections 1 after the other. She was reffered to our local childrens hospital after constant antibiotics and then they decided to try gromits which helped with the build up of wax.
Everything seemed great and we started to enjoy our little girl again. When she was 16 months old i found out i was pregnant again and 6 days before her 2nd birthday her little sister/best freind was born. After a rocky start they became best freinds and inseprable.
When she started nursery at 3 years old things changed she became a violent little girl. She would attack other kids for what we thought the slightest litte thing. No one would leave their kids unattended around her which broke our hearts. The violence did stop when she went to primary school.
Potty training was hard as she wouldn't poo and i couldnt understand why. She eventually after a couple of years getting comfortable to an extent at doing it out of the nappy, but this wasn't the same for peeing as to this day my not so little girl still bed wets and day time wets. She has went through all sorts of tests and treatments but nothing as of yet has worked.
At around about 3 she started to do as what we call it flap, she would tuck her chin into her left shoulder and shake while making a unusual sound. She would do this constantly normally when she was excited and she loved music. Family members would comment on this and after a while i thought maybe this is a little strange. I saw my health visitor and she said it was perfectly normal, so we left it. Everyone got used to it.
Primary school was rocky to start with, as leaving me was really hard for her to handle but she did and the first few years went great. When she started primary 5 she was 9 years old and this is when our problems started. Kids would laugh at her for her excietment tics. She started to struggle maintaining friendships and became a loner. Her unusual tics became the talk of the school kids would taunt her. She learmed to stop doing this and adjusted it to jumping up and down on the spot and flapping her arms up and down.
Primary 6 i was constantly at the school because she was being picked on but the school handled it and it seemed to have improved.
Primary 7 was when she started to lash out other kids and i had to go to the school on numerous occassions. My daughter took things very personally with other peers and teachers. We felt like everything was starting to crumble i took her to our Gp he reffered her to Camhs who told us she had anxiety due to her wetting problems and being the oldest of 5. She started to see a young persons councillor. Nothing changed!!
She started high school and went her seperate ways from her primary peers. Everything was going great though she will not go on the local bus to school thankfully my neighbour (whom i have known since i was in high school) has a daughter in high school and offered to take her to and from school.
Everything was going great but after 6 months of high school until a girl and she had a minor confrontation. She as of that day has hated school she has locked herself in her room refuses to have family time. She can't tollerate her younger brothers and sisters. No one can touch her things, say anything to her or she lashes out.
She came home from school one day and told her father and i that she didn't feel normal. Our world came crumbling down we felt helpless i again took her to the GP who reffered her back to Camhs. She has now being seeing an autisim nurse and things are slowly being pieced together. We are trying CBT and going at her pace as it takes her a while to warm up to strange people.
Her nurse has arranged for her to have the ADOS test and she has been referred to OT. Its a long process and my heart is breaking for her as she already attends Nucternal Enuresis for her night time bed wetting, daytime wetting clinic as this was just found out earlier this year also and she sees her councillor who she has started to speak to.
My husband and i have now been riddled with guilt as surely we should have noticed something just wasn't right and we should have pushed for someone to listen. We have been told that she more or likely has ASD along with anxiety, incontenance problems and the list justb seems to be getting bigger and bigger.
So this is our story, sorry for going looks like so much when actually it doesn't even cover half it.
Feel free to comment i will look forward to other peoples experiences and views.
Kelly x x
Just realised I added to it by repeating names! Now edited and removed from my message. You're nearly there. You've just got 2 left - message title and start of paragraph 14. (There is also your username, but I don't think that can be changed without starting afresh.) Keep going, you'll get the hang of the computer and being online offers many opportunities for you. And as you realise some of the pitfalls yourself you will be that much more aware if/when your children go online.
Hello K,
There are lot of details in your post, which could identify your child (especially if you have used your real names). In trying to get support you might inadvertently be revealing some very personal details in this public forum. Please keep this in mind when posting.
I am guessing that you have done the best that you knew how. From what you describe it sounds like the school could also have picked up on (and acted upon?) some concerns. But past actions cannot be changed, and right now you are taking action and looking for help and information. That's all that can reasonably be expected of you.
All the best.
Thanks Curious
I feel like an idiot now this is why i don't go on the computer much lol. I have edited some stuff names etc. Just need to change some more, thanks for letting me kniw much appreciated.
I agree the school should have picked up on a lot.
Thanks again
Hi
If the OT and the counsellor are speculating about it enough to refer her for assessment, they have already seen enough to give them reason to. It doesn't necessarily follow that she IS, but that she gives them reason to think so.
The important part is the actual asessment as this will be done by a professional with a greater ability to diagnose the condition.
You are clearly already talking with school, and apart from you they are the most important people to be involved, as they have care of her so much.
Your greatest personal help and support at the moment will come from this charity. These discussions are here for you to ask, and lots of us will be looking so you will get answers - just like this one! Don't forget to go through all of the information, and don't forget that there is a helpline and e-mail address as well for you to use.
You may find that you are the parent of a special child, and that makes you a special Mum. It isn't all doom and gloom at all, often the reverse.
Ask us anything you like, or just come here for electronic hugs if you need them. Just by the way we say things, I'm told you'll get an insight into our world.
I expect that you have some immediate concerns about her behaviour. Tell us about them and we may just have the answer for you!
Hope that helps?
Hi, my 5 year old daughter was having problems at school and was assessed by an occupational therapist and counsellor. They beleive she could be autistic and have therefore referred her for an official diagnosis. Unfortunately i have been told it could take up to a year before we get an appointent. What i want to know is
1. Is there a strong chance she is autistic or are they being cautious?
2. Are there any services available to me as she has not received an official diagnosis?
Its very frustrating at the moment with the waiting and not knowing what the issue is.
Hi Hun , I typed in is my 14 year old girl Autistic ? Your story came up . It was like reading about my own child .. I have now joined up on here so I know I will have other mums who understand .. How can someone from CAHMS or a doctor know , when they don't live with the child 24/7 . I got the blame , the fact that her father wasn't a good role model , the fact that she was profoundly deaf , due to menengitas as a baby ., attention seeking etc , No One would actually listen to me . CAHMS said she hasn't got any medical needs , but anger management could help . Flipping joke eh x
Hi All
having read all of your posts, I am amazed at how much help is NOT out there! I thought It was just us...we have suffered all of the above. It's exhausting, demoralising and highly stressful I feel for you all but am so glad I found your poSts!
since our daughter started secondary school our lives have been turned upside down!
CAMHS after CAHMS after freaking CAHMS we even tried private counselling due to the initial waiting time of over a year!
our daughter at the age of 11 first started to refuse to go to school, she was so distressed ....the school eventually helped with smaller class and cut down her hours. She could not manage the school bus so as working parents we had to juggle school runs and cut working hours. even with all of this our child still could not cope, we discovered she had started self harming, was suicidal and even ran away, we struggled on with CAHMS prescribing short courses of CBT and looking for triggers for the behaviour. As a parent I personally felt blamed, the advice (for my inadequacies) from school and CAHMS I took on board but nothing seemed to help. We have been back and forth from GP to CAHMS, me usually in tears, until we eventually thought if it's school and the social pressures then why are we making ourselves do this!
our daughter now 16 and removed from school as the stress was too much for us all, we are now home schooling, probably inadequately! The LEA are satisfied that we are doing our best in difficult circumstances, but as a result my daughter is even more withdrawn from society, although happier, she is not sitting GCSEs although very bright and a talented artist, it's not ideal. we now await a community paediatrician appointment...as a bit of expert help and advice would be great.
I just want my brilliant young daughter to get the best out of life, we are not afraid to say we need help, we've been asking for a long time now I just hope this appointment comes soon and that they do help us.
I am wondering what ELCAS is now cazz1968...back to google!
Hello Sparky, and welcome to the forums. May I suggest you start a new thread in the appropriate forum here and I'm sure someone will be able to offer some help with what is bothering you.
Hello,is anyone here to help me??? Please let me know,thanks!
I too am new to all of this. Its been 3 weeks since my 14 year old daughter has been diagnosed with ASD after numerous years of going into school and back and forward to doctors. It took until my daughter was self-harming, having suicidal thoughts/hearing voices for anyone to take any notice of what I have been saying. My daugher has always been withdrawn so she just sat at the back of the class being ignored and doesnt socialise or have friends but as a mum I have always been told it was just shyness - she now wont go into a anywhere alone or speak to her peers even if she has known them all her life.
She was eventually referred to ELCAS and I honestly cannot fault anything they have done She is now out of mainstream school that in her words was like going to war daily and she is now in a short term intensive unit a few days a week to help he learn to communicate and gain some life skills. I too am having to give up my job due to all the time I am having off to look after her and the drop in money is just yet another worry to add to everything else.
The website has been my lifeline for the past 3 weeks and in a way it is good to know that I am not alone in this.
Those results are truly amazing, given the incredibly difficult journey both your son and your family have obviously been on. What a fantastic achievement. You must all be so proud. To achieve those kind of results, through the adversity your son has clearly experienced, to me shows mammoth strength of character and clearly the type of person who is destined for very great things.
I also have a very supportive school, I just wish they were all like that, as is obviouslyy also the case with your son's sixth form.
I'm really smiling right now x
Happy for you to use my comments for anything that will help others.
I have a happy update to my story . My son re-did his frst year at sixth form college once he had his diagnosis. They have been excellent at making adjustments to timetable and working with him when he too has to miss lessons as he feels he can't cope.
He got his AS results yesterday
Maths A
Physics A
Chemistry A
Electronics A
Very proud mum and very appreciative of the understanding shown by the college. They should have permanently excluded him last year when he had a meltdown , hit a pupil and swore at a member of staff last year (according to their policy on gross misconduct), but their understanding sent us on the bumpy road to diagnosis.They have understood reasonable adjustments and work co-operatively with us. There have been no meltdowns at college all year ( he sves them for me!)
My lovely fellow-members,
I really cannot thank you for your kind words, thoughts and comments, and for sharing your experiences, both from a service-users perspective, and that of a concerned and frazzled parent.
No doubt the system is a minefield, one which we work out after crisis upon crisis. I am going to post a new blog, requesting ideas, thoughts etc. but was wondering if I may use some of this feed in my application for a charity i am intending to set up?
Of course, all your comments will remain entirely confidential, but how are the powers that be (with the cash) supposed to just take my word on it? My application needs to be in by 1st September, and there is £10k up for grabs. Initially, it will have to be in my local area, but ideally I want to span this out nationwide. What I propose is a team of 'crisis workers' (who can come in as a neutral party at point of crisis, thereby supporting the young person and give the family respite) and support workers (who can attend CAMHS with the young person, school appointments etc etc therby allowing mum or dad to continue working, alleviating their stress etc). Finally, my grand plan is a respite centre. When things are just too much, for young person and family.
I'd love to hear your thoughts about this, and suggestions of additional support that I may not have already mentioned, this can be included in the application.
I was in A&E a couple of months ago with my daughter who had self-harmed and wanted to kill herself. After 6 hours of waiting we finally saw the child and adolescent psychiatrist who just kept repeating CAMHS, CAMHS, CAMHS.... When I pointed out that CAMHS were only available during office hours, and were buckling under the pressure, I finally said, "....and I've lost my faith in CAMHS" He replied, "Well you'd better find it again because CAMHS is all you've got".
I beg to differ, if I have my way peeps.............:-)
Oh what sad stories and they sound like my sons too. You must all feel knackered and let down by the system just like I do
My son wasn't diagnosed until he was 17 - last year , after a period self harm and depression.
We had two previous referrral to camhs when he was 7 and again after a very bad run of exclusions at school . Violent outbusts that everyone thought were anger management issues . The finger always seems to point at Mum but my conscience was clear - he has a twin brother with no such issues , so why blame parenting.
The diagnostic test is so straight forward and took 30 mins max. Even last year when they finally said they thought he had autism there was a 6 month waiting list.
The depression made him miss so much colleg he eventually stopped going, but all credit to him he chose to go back and repeat the first year of 6th form. It wan't plain sailing by any means but he got through the year and we are waiting for exam results.
Its been been such a tough childhood which has affected the whole family. I undertsnad the strain with parners - we are trying to get to Relate but can't get out of the house often enough to sort it out.
I am much better at fighting his corner and knocking on doors now. I wish I had been able to do more when he was younger as he would be in a much better place now. The last few weeks have been horrible as the boys brigade group he had been part of since he was 5 refused to take him on camp with two weeks notice , after another violent outburst, and he is not welcome back. My heeart bleeds for him as he is excluded from yet another part of the community. He has been suicidal and is on Fluoextine. The GP has doubled the dose to help him through these bad times.
BUT still he keeps on getting up after the world knocks him down and carries on ... long may that continue.
So right about Mum's not getting 'me' time and the difficulties with holding down a job.
Gives me hope that my son can overcome his problems, thank you xxxxxx
I'm sitting here reading your stories and crying! I have joined today out of desperation trying to find someone to help my son. He is 16 years old and newly diagnosed with ASD. He had as what can only be described as a breakdown 3 years ago when he reached adolesence, and life has been a living nightmare ever since. He has become totally isolated, unable to attend school at all for the past 6 months and has become so anxious and depressed, afraid of other kids and people he doesn't know, that he is unable to leave the house most days. As a result I have had to give up my full time job and work just 2 days a week when my daughter can look after him as he cannot be left unattended. He has had involvement with CAMHS and has been offered therapy with a nurse but because I have been unable to get him to go for the appointments I was informed last week that there is little they can do for him, therefore will probably be discharged from the service.
He is having meltdowns on a daily basis due to the boredom and frustration he feels, smashing up the house, geting more and more aggressive, grabbing knives and threatening to kill himself. He wants to go out and have friends and do the things others his age are doing but his lack of confidence and his inability to cope in social situations has meant that he is unable to cope with the outside world.
We have a temporary social worker who told me that once diagnosed he would be passed on to the disability team in social services and we would be able to access more help, but as yet they aren't willing to take him on???
I am applying for funding to get him into a residential college which specialised in ASD and know I have a fight on my hands due to lack of funding but fight I will!!!!!!
If my boy is to have any sort of life then I feel this is the only thing out there fo him, he cannot go on the way he is and neither can I, there is no help and no support, I have been fighting for over 3 years. Social services, CAMHS, what a waste of time!!!!
Sorry to ramble on so much but it saddens me so much to watch my son suffer every day and to hear of so many others in the same situation or worse.
Our kids deserve the help and support to enable them to live a full and happy life just like any other child does. Unfortunately supportive and loving parents isn't always enough, much more needs to be done!!!!!!!
Stay strong Kitty xxxxxxxxxxxxx
Hi Kittypookie.
The problem with any form of ASD is that nearly all 'professionals' believe that its a mostly male based 'disability'.
Because females of any species tend to be more thoughtful before they act or observe before interacting with a situation, many girls with forms of ASD go undiagnosed because they can 'hide' it or blend in well enough for no one else to really care.
I was diagnosed 5 months prior to my 18th birthday, and that was after my mum discovered I'd been suffering severe depression and suicidal thoughts for years, only that due to my *bleep* of a dad and his new wife, it'd been drummed into me that no one cared how I felt, and that things just got worse if I told anyone. During year 11, I developed overwhelming OCD tendancies that began to cripple my life, it was this point when I'd been up 48 hours trying to get a months work of homework done at once that mum decided enough was enough. Even my teachers suggested I may have OCD, so I went to the GP and told them.
The sad thing was, I had to 'justify' that I was suicidal. Though the actual thought of it scared me I'd still find myself thinking of it. I had to go into explicit detail about how many ways I'd thought of ending it for at least ten minutes (thankfully mum was out the room) before the woman admitted I had a problem and referred me to CAHMs....who took over three months for an initial assessment. That was when it was suggested I may have Aspergers. It took another 6 months until I was actually assessed for ASD. Only then did I start getting the help I needed.
Since I've been diagnosed, things have gotten better. People around me have changed slightly to accomodate me better, and in turn I've slowly changed in some ways that make things better for us all. i.e. I'm less inclined to lash out at my sister. But what I think helped most was my school allowing me to spend time with other kids in the ASD unit, all of them were younger, but I actually enjoyed socialisng, I didn't feel under pressure to be there and I started looking forward to it. Now I chat to friends online a lot more rather than remaining closed off. But the best thing is, I feel that my family are beginning to understand me a lot more, and for once seem to accept it, rather than me being politely overlooked everytime I did or said something that they didn't feel made sense.
It does worry me how long it took to get diagnosed with all the symptoms being there since birth, its as though you or your family is meant to magically produce a self diagnosis, and then have to hand over all the evidence to the GP who isn't even qualified to help.
In terms of your daughter and your partner getting along, is there anything your daughter loves/is 'obsessed' with? I'm into dragons and some video games, so when I was diagnosed mum suggested her boyfriend and I chose a video game that we could both work on to complete and 'bond' over. Surprisingly it seemed to work. We're not best of friends, but being around him isn't as awkward as it used to be.
Hello Indie Girl, thank you so much for responding to my post. Firstly, I would like to offer you my deepest condolences regarding your mum's passing. My mum, too, is my rock. I know how much I rely on her for support in all of this. Bless you.
My daughter too, has had difficulties in her education. Whilst she hasn't been excluded, she must have only been to school for the sum total of about 50% last year, truanting, not because she thought it would be fun to 'bunk' off, but more because the thought of being around big crowds of peers was so overwhelming, as was the fear that I would get into trouble, that she would head to school in her uniform and not turn up, going missing all day. Understandably, I was always at my wits end by the time the Police found her.
I'm not sure whether or not this will help but, I've found setting out a routine really helpful. My son, who is 7, has his own 'Friday'. My daughter understands this, and allows him to have his own time with me. I'm also fortunate that my partner has his own home, so he also stays there on a Friday, allowing my son total, uninterrupted attention from his mummy. My daughter has her 'Monday', where she gets to talk to me, uninterrupted, about all her worries, concerns, sleep in my bed if she wants to and both my kids understand that my partner also gets his night, Wednesday, where we both book in a babysitter that my daughter is familiar and comfortable with, and we get out, even if is just for a walk, for a few hours. Trouble is, we don't get a 'night' as mum's, do we?!
I know my daughter is all I talk about, my partner, even though she now has a diagnosis, still struggles with her behaviour and you end up fighting over the petty things when you both know the real fundamental reasons behind your distance.
But having dedicated and regular timeout has helped, do you have any access to this?
I'm in Teesside :-( x