To be angry at my parents (Adult autism diagnosis)(29 Posts)
In the past year i was diagnosed as Autistic, my parents are separated (for the past 22years they've never spoken a word to each other) so when I finally felt brave enough to tell each of them separately, one said "yes I thought as much since you were a toddler" and the other one said "i wondered all your life and nearly took you to a GP but changed my mind".
That hurts more to me than if they'd simply never realised. I had a horrid childhood, everyone thought I was naughty and just plain weird. I was disciplined constantly for things I didn't understand I was doing wrong. I can't get past the fact that if one of them had just done something then i would have had the support I desperately needed.
I had a suicide attempt, almost had my DD taken from me (because of the attempt) and had relatives who wanted a child, try to adopt her via courts/social services claiming i was "not stable" and not once did either of them mention that I could have serious mental health issues that could have contributed.
My DD is now 4 and shows similar traits to me, however because she is confident with people there's a lot of scepticism as to why I'm getting her assessed. When I discussed it with her dad (been separated since pregnancy) we both said it's better for her if she knows, for her quality of life. So we can get her in the right school with the right support. That's what I feel should have been done for me I was sent to the local school which is the worst in my entire county and was tortured for being so 'different'. We had a special needs unit that looked reasonably safe and inviting but my DM was clearly ashamed that I could possibly need it. On telling her about DD she simply said "it will be learned behaviour from you", absolutely adamant that there's no way her precious DC could be "weird" too
Apparently it was simply embarrassing to have a disabled child and easier to pretend I was rebellious and strange. DM always said I had "middle child syndrome and needed the attention". I remember her always saying "I don't know why she's like this, must take after her dad". He said the same but vice versa (they absolutely hate each other).
The thing is, no-one is admitting they could have done better and that's what's making me so angry. Should I demand some kind of apology? Should I go low contact? Should I just get over it as I'm not a child anymore?
Obviously it's something that I can bring up at counselling but I'd love the opinions of others about what repercussions they would expect and i don't have anyone to ask in real life.
How old are you, OP? I'm autistic as well, and my Mum agrees she noticed I had certain differences, but back in those times (I'm 38) there was very, very little awareness.
I have no doubt that, if there had been, my parents would have pursued the matter further, though. At the time, I honestly don't think they knew what they should do.
I think many people are very frightened of the stigma of disability. Your parents may have been loving people who genuinely thought they were doing their best for you by pretending you didn't have any problems so that you would be more accepted by society.
Of course they could also have been complete cunts who were only concerned that having a child on the spectrum would reflect badly on them.
Only you will know which.
I'm coming up 26 so it wasn't super well known but enough for both parents to say they thought that's exactly what was wrong. I think I'd be ok with it if they were just confused and scared, but it felt growing up like they were mad at me for it? Like always said "why do you have to be so awkward".
I think DF was trying to help me be "normal" and DM was ashamed and worried about how it affected her (as she is like that with most things).
I think it is very difficult for parents with children who are autistic, and obviously very difficult for you too as you have said your childhood was very hard. I believe there isn't currently a good middle-ground in terms of education. I actually felt a bit upset when you said that you would have got the support you needed. I read this all the time online and it is very vague. Support is often labeling and not productive for the child, expectations can be nonexistent. There is a mencap piece of research that shows children with support in school did less well than those without.
Clearly your emotional well-being has been ignored to a degree by your parents but it is up to you to establish if this was neglect or sheer confusion when dealing with a system that simply doesn't understand autism
It sounds like they've been in denial and unfortunately there has been a stigma around having a child with disabilities. It is wrong looking at it through modern eyes but things were so different even 20 years ago. You sound like you've been through hell but at least you have a diagnosis now and can start to look to the future. As for your daughter I agree if you recognise certain traits start the ball rolling for her to be assessed.
I think as well you have to understand the context of girls and autism. Asd is massively under-diagnosed in girls. To the extent that many people believe girls simply don't have autism. This isn't the case, but we are only just starting to understand its presentation in girls and women and certainly 20 years ago things would have been really different.
That all said, I'm sorry you didn't get the support you needed X
chances I'd hesitate to say your post is ill-informed, what with my life being so difficult and all, but I totally disagree and would be keen to see the study you refer to.
I can understand your upset,completely.
But when we were children (I'm about 2 years older than you), girls simply didn't have autism. It's only been recently acknowledged that it presents differently in girls and boys due to socialisation etc.
My DD is 20 and has it, too. When I mentioned this suspicion to the Dr/HV, I was 'assured' that I was just 'depressed'!
As everyone else has said, it is more common in boys than girls and researchers don't quite know why yet. It does tend to be hereditary though so I would definitely be Pershing a diagnosis. I also agree that support is needed. My nephew wasn't diagnosed until he was 8 and once he moved to a primary school with extra support his behaviour completely changed and he seemed much happier. His previous school insisted he was just being naught. Saying that, it does depend on the school.
My husband is 32 and was only diagnosed in his late 20s because I recognised the signs. His parents always said stuff about him being weird or naughty and it's damaged him quite badly. He came up with coping mechanisms himself and now he's in counselling they're find it hard to remove the ones that cause problems for him because they're so ingrained. His mother has never acknowledged the autism since she was told and his father outright said that he didn't have it, despite him having been diagnosed by a doctor and seen by a counsellor and a psychiatrist. If I'd have been there I'd have been severely tempted to smack him one. I would definitely be annoyed at the attitude your parents are displaying. I often find I can't settle unless I've said my piece but then I know with my parents that there's no point in bothering because they won't listen and it will only cause me to get more upset and more hassle, so I think only you know the best course of action there. My childhood was not great, like my husband's and now we're having a baby we console ourselves with the thought that we can now do for our child what was never done for us. You can put all that sadness into making things right for your daughter and giving her the chances you never had.
Lonny, I am struggling to find a link to the research but came across this press report.
It briefly mentions the research that showed children with more support made less progress than similar children not receiving a lot of TA support. I don't want to misquote but I think the findings meant there was a need for better teacher/TA planning and that children who were given a lot of TA support were not accessing the specialist training that a teacher has.
Based on this I believe mencap have offered free seminars to headteachers and sencos in order to bridge the gap which is significant. My comments above are due to concerns in our own family situation. I was aware of the research but it was also mentioned by our EP. On reflection she may have been encouraging a special school as an option as many mainstream schools struggle to be inclusive. I believe that mainstream despite issues is better in our situation but it has not been easy, we have had to move to a more inclusive mainstream school as our local school 'labelled', e.g. constantly predicting violent behaviour in the future despite no current evidence and pushing us to move on. This is absolutely due to an early diagnosis, e.g. 'when they (wtf) get an early diagnosis, you just know the violent behaviour is coming'. He wasn't given a chance, they bought equipment he didn't need and built a file showing how much he was costing them. They told me this would help to get him to a special school at the earliest opportunity. We honestly take him everywhere without any issues. Think the senco is a fan of eugenics.
I apologise for ranting but I would like the OP to understand that although times have apparently moved on, in reality for parents it is very difficult to know what is best and get the best for your child. A lot of information online about early intervention is USA based and also sales based.
I really hope I haven't said anything untoward xxx
I know there has been concern for some time that some TAs are effectively in the position of teaching individual children within a classroom. Which means some of the kids with the greatest needs, get taught by the least qualified staff.
Lots of things spring to mind here. It's possible that one or both of your parents are also on the spectrum and have had no support which may have made it difficult for them to empathise with you. As others have said, girls were very seldom diagnosed 20 years ago. But also, the whole culture of diagnosis has changed. Now we see it as recognising that someone may need extra support but 20 years ago it was more a case of 'labelling' children and a label of autism could be seen as something which would stop you from being able to do things. It's also not so many years since autism was firmly believed to be caused by the emotional detachment of the mother so to have a child who was diagnosed as autistic was not just shameful but meant that the mother was to blame. Although that theory was disproved in the 70's the stigma of it stayed around for much longer. I think, rather than asking for an apology, which is likely to make your parents defensive, you might get further by asking them what it was like having a child who seemed different to other people's children. If they are allowed to talk openly they might be more able to admit their mistakes. Or they might never reach that kind of insight. Ultimately though, it is really about your future and your daughter's future. The past, as they say, is a different country.
OP, my eldest DD is 30, she has Autism and ADHD (she's dyslexic as well).
I fought for a diagnosis from around 18 months. Eventually at 9 so 1994, it was becoming easier to find a Private Psychologist that would do an assessment and the Education Authority we're accepting them and then agreeing to do their own assessment (so not just accepting them, as such).
It totally depended on the criteria of your LEA, ours, in Liverpool needed children to be 'behind' by four years and to have considerable behaviour problems.
I spent ten years pushing for support. Along the way I was told that I wasn't Parenting properly, I was obsessed with my DD and looking for something that wasn't there and lots of other insults.
Teachers would still say that they didn't believe in ASD/Dyslexia, so would some GPs.
That was still happening as late as 2010, some Professionals still don't believe in ADHD.
My DD was under AlderHey from 12, support in schools still wasn't great. There was and still is negative labels put on people with Additional needs.
A diagnosis/your Parents pushing may not have changed anything.
Also, even when I was younger/a child, the attitude was that if a family couldn't manage someone, without support, then there were places that you send them to.
It took until the 90's and the DDA and Community Care/Educational Acts, for there to be a shift in Society's attitude around the being a duty of care/responsibility.
Birdsgottafly that can't have been easy, we all just want the best for our little ones xxx
However, the whole area of autism diagnosis was different twenty-odd years ago. It might be that at the time your mum thought about taking you to the GP she equally had her own concerns minimised or felt that it was all her fault somehow - there have been some quite horrific theories about the role of mothers in child development over the years. In the future, depending on whether you want to or not, you might feel able to explain to your parents what they can do to help you and your DD now that you have a different understanding. It is a big deal to get a diagnosis, but now that you have it, you have a bit more information and that information can be useful to you.
There was just less support to have been given twenty-odd years ago as much less was understood about autism then than is understood now.
I hope that your diagnosis with gets you the support you need now, as a person and as a parent. Adults whom I know who have been diagnosed with autism during their adult lives have talked to me about how empowering it is to understand how and why they experience the world in a different way to people who do not have autism.
Wishing you all the best OP
Your how did you do at primary school?
For your age-group, the only kids that were diagnosed were the ones with behavioural difficulties, because they were disruptive in school therefore school pushed for help.
The ones who were within academic and behavioural parameters were declared 'fine' by schools therefore no diagnoses were pursued or were even actively discouraged on financial grounds. Unless the parents could pay for private assessments, schools continued with the poor parenting mantra.
Your parents may have been in denial etc. but and it's a very big but, depending on your school's view of you and your academic capabilities, you may not have met any criteria for dx at that time.
A decade ago, dd (similar age to you) was assessed by an Ed Psych and afterwards we discussed a dx and both of us agreed it couldn't possibly be Asperger's because she could maintain eye contact and she has lots of empathy. Nowadays, of course, those opinions are heresy because it's only very recently that Lorna Wing's work has received the credit it deserves re presentation in girls/women.
I do understand your frustration, but please try and focus on getting your dd the help she needs, you're in a good place to do that, you understand what it's like for her much more than an NT parent could, and you can make a positive difference to her life
How old are your parents? My dad is in his 80s and to this day still believes that my sister who suffers from bi-polar disorder "just needs to grow up". He's in complete denial. He talks about her manic episodes as though she's a naughty kid (she's in her late 40s) and he will just not accept that she has anything wrong with her other than bad behaviour and inability to manage her money. This is after years and years of her being in and out of hospitals for treatment. Still no. I just wonder if it's a generational thing. Clearly we are much better educated and aware of autism and mental health issues these days but it certainly wasn't discussed back in his day.
I am a retired teacher. The first child I taught who I recognised as autistic is 20. That means that there were children before that point who fell through the net because of my ignorance. It also shows how little awareness there was even 15 years ago (he was in reception at the time). I think if your parents had taken you to a GP there is every chance that the GP would have dismissed their fears.
My own son , now 21, wasn't diagnosed until he went to Secondary school, because teachers at his Junior school labeled him as naughty.
As others have said, diagnosis for girls was quite rare, and even now parents of girls often struggle to persuade professionals that there is anything wrong.
I understand how upset you are, and hope that eventually you will at least be able to see your parents failure in the context of the times.
My daughter 22 has recently been diagnosed with moderate to severe autism , we fought for years to get this diagnosed . She also had dsylexia. Feel so guilty that l should have pushed harder to get her diagnosed do that she could have been helped at school
Help at school does not seem to exist for children with high functioning autism though -even with a diagnosis
This lack of support and refusal to recognise that a rise in anxiety was due to school
she's fine when she's here rather than home hmm single parent, that must be why led to dd having a breakdown at 13
So little seems be understood about girls with autism
Even if your parents had taken you to the doctors it doesn't necessarily mean your life would have been different or better
We all have what ifs and remaining angry will not resolve anything
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