I'm new

I guess it's good your children have been diagnosed as children though. I was diagnosed last year aged 23 and had no support but many struggles through school. I know there is someone on here who was diagnosed aged 60.

Hello there, this is my first post.  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 Daisy,

I am new too and I totally understand how you feel.  I think I have experienced every single emotion in the last 6 months but that is normal.  I was the same and believed my little boy wasn't quite right and literally my whole family (on both sides) said it was my inexperience as a mum and he was "just a boy".  Even now with SPD as the disorder being looked at by the professionals, certain family members still argue with me and wont have him "labelled", truly exhausting.

The upside I have discovered is that although I wish with all my heart that they were right, I love my son so much and will do anything I possibly can to help and I accept him for the wonderful, loving, happy person that he is. I think everyone at some point feels like you do so don't feel guilty, feel great that you are a good mum!!!! keep going x

Hi Dasiy,

Yes, what you're feeling is normal. Many parents go through a process of feeling guilty, either for having tried to ignore the symptoms and hoping they'll go away, or blaming themselves for the symptoms existing. And many 'grieve' for the loss of the child they thought they had, if that makes sense.

Try to be positive. Nothing's changed. Your son is still the same as he always was. And whilst being on the autistic spectrum make living in the society we live in difficult at times, it's not like having a terrible illness, or being in pain all the time. You son does not suffer from autism.

Hope this helps.

hi daisy it is very hard to come to terms with.my son was diagnosed in nov last year and am still coming to terms with it!!i feel sad for my little boy,but he always seems happy!!how is your son affected?make sure u get as much help as u can for him!xx