18 year old daughter with late diagnosis

Hello there

I am Mum to a gorgeous, bright, articulate girl who turned 18 last month. She was diagnosed with ASD and other issues at 16 years and I am feeling very guilty for not persuing a diagnosis earlier in her life but I felt at the time, it was best not to. If I explain - I think I am looking for some support and hopefully some reassurance. 

My daughter has always been very bright. She knew all the letters of the alphabet at 18 months old , she would show them in a book or on a screen, she was obsessed with the TV show countdown and would point out the letters. however, she was totally non-verbal. She didn't babble or repeat, she was simply silent. Her father and I divorced at this time and I think I put some of her "Characterisitcs" down to that. However, at 2.5 years, she suddenly started to speak, fluently, in full sentences, using an incredible vocabulary for someone so young. She spoke rings around her peers. I ran the Nursery school she attended and we had to buy new educational toys and puzzles especially as she had finished them all by 3 years. She could read fluently by 3.5 years. Numbers, complex shapes, puzzles - all simple for her. The others would draw people or animals, she would draw plans for play equipment for the nursery playground. But she didn't play "Make believe", she didn't play with anyone, she avoided any kind of physical contact with the other children, she hated singing or standing up in front of the others. Any kind of performance upset her enormously. I knew then I think but didn't want to think about it. 

She went to primary school at 4 and academically, did incredibly well. Socially, it was a disaster. At best, she was cool towards her peers, her reports all said the same thing, 100% for schoolwork, way ahead of her peers but she had no friends. She was intolerant of their inability to understand what she understood. Her humour was so adult, so sarcastic and cutting, they didn't understand she was trying to be funny. I could see the issues but I felt that if there was a real problem, the school would raise the elephant in the room, ASD. They never mentioned it. Her SATS were the highest possible. She was labelled as "Gifted"

Off she went to senior school at 11 years. I cringed thinking she would never make any friends. I warned her firmly against being judgemental about others and the old adage "If you can't say anything nice, don't say anything at all." However, this made her go the other way and she became very quiet and insular, not being able to judge what was a good thing to say, she said nothing. I feel totally responsible for that. However, against all odds, a group of children decided she was odd in a nice way and took her under their wing. They were all bright and articulate and they remain her friends today. They were her saving grace through school and because of their love and support, school became somewhere to enjoy rather than to dread. 

At 14, academically everything changed however. Independent learning was a disaster and her grades started to slip from straight A's to B's and C's. She became upset when we tried to ask her why. I tried every kind of tactic, reward, positive reinforcement, praise, scolding, tears of frustration... the grades just got worse. She was totally disorganised, missed assignments, lost things constantly, forgot information. I rang the school to make an appointment with the deputy head who said she was on his mind as he wanted to speak with us about something. We got there and he suggested to us that she had ASD. I suggested she had ADD. He suggested we should have her formally assessed, we jumped at the chance. It didn't happen. The waiting list was too long and she left school at 16 with no diagnosis. However, one way or another, she did manage to pass all her GCSE's, although not with the A grades she had been predicted.

She started at a very well regarded college to do A levels in maths, further maths, physics and computing. Things did not go well although again. Socially, she met a nice group of young people who again, thought she was nice if a little odd and adopted her as their own. Thank goodness for the kindness of some young people. Not all, but enough. 

The first parents evening we attended., all her tutors said the same thing. This child has issues, get her assessed. She is failing. She has aspergers they said. But the college did not carry out the assessments. Not in their remit apparently. We went to the GP, he referred us to Outlook South West as at 16, she was too old for CAMHS. The waiting list was a year. Another year of upset and failure. We were at our wits end by now. So finally the GP suggested a private referral, could we afford it? We would find the money. So we did. Best thing we ever did. Within 6 weeks she had a firm diagnosis of high functioning autism, ADD, dyslexia and dyspraxia. What an odd feeling to be relieved to hear that, to see it on paper. How sad that it comes down to a label to enable your child to get the support they need.

Armed with said label, the college came into their own. She now has huge amounts of support. She was able to restart her AS level year and has just finished her exams. They fully expect her to get straight A's. It hasn't been an easy year but the support has meant that she has been able to cope better and stay engaged. We have high hopes of A levels and maybe university if she feels able to go. But more importantly, apart from the odd meltdown, she is happy.

But every day, the weight of guilt presses on me. If I had pushed for a diagnosis when she was small, wouldn't her school days have been easier with support? But then, would our expectations for her behaviour been different? She has always been polite and although she hates social occasions, has been brought up as a neurotypical child - she has learned to cope. Did I do the right thing? It's so hard to say. What does everyone think?

Sorry this is so long, this is the first time I have ever discussed this with anyone.