Published on 12, July, 2020
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.
Thank you to all of you who have taken the time to read my over-long post and to those who kindly responded.
I find it very reassuring that I am encouraged to look forward to what the future may hold rather than dwelling on what might have been. It's true, I made the decisions I made with the best of intentions at the time, rightly or wrongly. I just hope my daughter hasn't suffered too much as a result.
I agree, I don't like the term "high functioning" either - it implies others are less so but unless I am mistaken (and knowing so little about all this, that's quite likely) aren't all people unique? If this condition is a spectrum, surely that isn't a rating system? Whether they have a diagnosis or not, a physical disability, a mental health issue, everyone is better at some things than others and we all have differing abilities. I only used the term because we were given it but it's not really a term I am comfortable with.
We don't tell many people about my daughter's diagnosis, not because we are ashamed but because we don't want people treating her differently. She is just C*****n and to us, that's all that matters
Thank you for your opinions and support. It has brightened my feelings about how I handled things and made me feel more comfortable. Hugs to all of you, even those who don't want one... A virtual hug x
Hi
Sorry to say this, but we consider early diagnosis to be vital in the upbringing of children.
Like any loving parent, you wanted the best for your child. It must have been a very easy trade-off to take, enjoying the 'success' but at the same time allowing the successes to supress what your instincts told you to be the 'truth'. My own childhood academia mirrors your daughter's, so I feel able to understand that part of her experience, but my social and familial experience was the opposite of what hers appears to have been.
I do not like the term 'high functioning'. I do not like the implication that there are 'low function, middle function' or any other meaningless and unmeasurable 'degrees' of difficulty. I see it more as the holistic effects of the condition, but very much with individual aspects. Opinions vary on this.
I say this because, as anyone on here will support, and indeed as you say yourself, all Autism Spectrum people share common 'difficulties.There is a move to rename Asperger Syndrome, a.k.a. 'high functioning', as type 1 ASD, as a more accurate way to describe it possibly, but mainly to acknowledge this salient fact.
The 'truth' is that your daughter has been lucky in having not only such a good Mum, but also in finding supportive groups who embraced her difference. Many on here would be jealous of her for her life's experience so far, I think.
I was regarded as academicaly 'gifted' too, but it was only me repeating what I saw and read. The real struggles started when I moved from a 'record and repeat' education to a 'you have the tools, now think for yourself' education. The transition from 'O' to 'A' levels was tough in ways that I had not expected. The shock of the unfamiliar, as it were. You highlight this very effect in your daughter.
I think that your daughter has always been aware of her difficulties and got along OK thanks to her environment. This is not to suggest that she didn't suffer some of the worst effects of the condition, more that her wider environment seems that have been less threatening than most of us experience. Perhaps you live in a closer more caring community?
Either way,you're asking the question of your own parenting, to the point of feeling guilty about it, so I would like to say this to you.
At any given time in their lives, as parents we are called on to make decisions for our children. It is only when they are grown that we can finally see the results of the decsions we make. What we hope for is a reasonably well balanced individual who is equipped to go out and make a good life for themselves.
With any child, it's always hard to tell if we made the right decisions, and it is easy to go back on unalterable decisions and question them again, even if you end up saying 'if I'd known then what I know now...'. You didn't know, your judgement was always based on your concurrent belief and understanding.
I think you've done marvelously, but that's just my opinion of what you say here. If you asked me if I would have liked a parent like you, I would answer 'yes please'. This means nothing to you of course, you don't have a direct comparison like I do, and it is better that you take my word for it. I base this judgement both on what you say and the way you say it.
If you know nothing else about the condition, you'll know that we are honest and truthful.
I'm afraid to say that the only person who can answer your question is your daughter. What does she say?
Hi Redd,
All anyone can really give as an answer to your questions is 'possibly'. There's no perfect way to bring up an autistic child and beating yourself up about everything you might have done wrong will only serve to hurt you. I'd be lying if I said my own childhood, as a sufferer of Asperger's, was a happy one, but that's to be expected with such a condition and my mother was not to blame for my difficulties. She may have made some decisions that weren't so great, but that is a human trait and I think she raised me to be a good person. What's more, she did so with little help from my father, who lost interest in fatherhood as soon as it was no longer a novelty and whose sole purpose in my life now, at 20, is to serve as a fine example of how not to behave.
It sounds to me like you're doing a great job. Ignore that little voice in your head that asks 'what if', because of course there are going to be things you did that you perhaps shouldn't have, and things you didn't do that would have been a good idea. It's impossible to perfectly raise any child, autistic or not. You took the first step in the right direction simply by giving a monkeys, and that means your decisions will have been made out of love.
Well done for rising to a tough challenge! :)
What a wonderful story, your daughter has coped without a diagnosis and a diagnosis doesn't always mean the right support. This is one of the biggest myths surrounding this subject, at least not in mainstream school. As I have said in a previous post what is the value in a diagnosis? My opinion is It tells you what its not.. it's not bad parenting, you should not feel guilty you should feel very proud of yourself and your daughter she is suceeding against the odds and that is rare.. schools have responsibilities too do they feel guilty for not identifying special needs earlier? Go forward dont look back and give yourself a pat on the back..