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 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.