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It’s taken 9.5 years to get this diagnosis. Having been sent on parenting courses, had a behaviour expert come for 10 weeks to our home, had a 1:1 paid for by us in his class, told to smack him by friends and family, needs more discipline by others, or tell him he has to do it!
It’s added many grey hairs to my head and at times strained all of our relationships within our family.
As we have had nothing happen for 4 years and he has been suffering from bullying at school, which they have been dealing with. The school wanted to bring in Behaviour Management and we have already been down this road and I keep saying his behaviour is the outcome, focus more on the why.
So before they did, I went back to the GP who refers me to the Paed and have to once again go through how he is getting on at school, social settings etc how my pregnancy was (they should be able to tell me, it’s all in his massive file written down each time we visit! Nothing has changed about his birth! lol)
And in front of him without any warning, having gone through a questionaire from the school and us and all his history, bang. She said it. Aspergers. Just like that.
And so now I have walked out of there pleased we have a label? but confused that we now have this label. For you see for me it doesn’t change who he is or how we deal with him, it’s almost like society needed this label to accept him. Overnight the school now views him differently and his IEP will be written differently. Grandparent are sad ‘I thought he would grow out of it’.
I left it a while but I have contacted the National Autistic Society, whom were so very lovely, supportive and helpful. They gave me so much information, leaflets and support groups. But now here’s the thing. I feel really confused.
I have always felt that as a Mother I was judged by his behaviour, I have had random strangers comment and tell me that I should watch ‘Super Nanny as I obviously need tips’ with the child who is having a meltdown. I have felt that I am not good enough. And that I was doing something wrong.
And now this label takes that away for Society to say to me that ‘you’ve done so well with him, that it can’t have been easy!’
I have felt angry, that it has taken so long to get here and sad that maybe in trying to fit in I have wasted time.
But I also don’t feel I fit in now. He is in mainstream school, yet he is different. But if I go to a coffee morning support group, I feel like a fraud, because he is not ‘severe enough’ (yes my stereotying, judgement and fears I know.) So where do we fit in?!
Part of me doesn’t care as we have lived like this for so long and well…
I just want to know if anyone else has felt this or experienced this, not just with a child with ASD but any diagnosis?
We haven’t had a diagnosis and sometimes I think my mind is off somewhere else even considering getting one, but most of the time, since dd was a toddler I have considered aspergers. She doesn’t have the triad of impairment or whatever it’s called (the three things they use to diagnose) but she has all the things that go with it. I have the book highly sensitive child and it describes her exactly… So is she just an HSP? Or does she have aspergers?
When I read the book it kind of made me feel that was her diagnosis in a way. She’s not just spoilt… she’s highly sensitive. But like you I feel does it matter? Whose benefit is this diagnosis for? For society to accept them for who they are… Because without the diagnosis they’re just a naughty child. Makes me so cross.
I know I’m not in your position but just wanted to send you huge hugs. Xxxxxxxx
mummy to dd(15), ds1(12) and ds2 (5)
LETS number 144
I think it can be hard to feel the ‘fit’ because ASD can be so very different. I’ve gone to groups and felt like I don’t fit for the opposite reason, my son has needed more support than the children there and they talk about things that they can do that we as a family just can’t. I would persevere, you may find things that you didn’t think would help because it’s not a ‘big issue’ but actually makes life just that bit better for everyone. Anybody with a child with ASD should be very aware that it’s a spectrum, and no two people/children will be alike. You may have found things that work, that you just do without thinking that would help other families, who haven’t thought of an outcome that way, and could make a very valuable contribution with advice and idea’s.
I think as it settles in it will become easier to adjust and find your place. Whilst people argue against the need for diagnosis, I actually think it’s an important part of acceptance and understanding of what makes us tick, and gives a clearer idea of things that may help. It certainly reduces the pressure we place on ourselves to try and conform.
Give it time, but don’t feel you’re ever alone.
Thank you both for your lovely, supportive comments.
Sky-Blu both mine are sensitve too. One is mostly Hypo and the other is extremley Hypersensitive. They were both diagnosed with Sensory processing disorder a few years ago. As well as other labels. This has been helpful like livelovelaugh says to have a diagnosis to read up and understand situations that cause problems for them.
Livelovelaugh, thank you for your post. I like your positive spin that I could make a valuable contribution in a group. You’re right there are things that we have been doing for years that I could share and even if it benefited one person, that would be really valuable. The same as, I would like support and guidance on gearing up for Secondary schools in the future.
I think the nicest thing that you said is about not feeling alone. I think that’s probably what I was crying out in my long post. So Thank you
So do I tell him? Because he is so literal. When he was told of other diagnosis’ that’s how he introduced himself. Hello my name is…. and I have this this and this. The SENCO had a go at me for this! It confuses people. And now we know why he speaks like this, so we are worried that he will tell people and they will judge him and some people may be unkind. Although at his age I am aware there are support groups and things on line he could access. This is just the next step I guess.
So do we tell him and any advise on doing this for such a sensitive, worrying literal child?
There are books that help explain the condition, and I think children should know. I wouldn’t want something about me to be kept secret from me. It helps to understand why he may find some things so difficult, and to be more tolerant of himself and the things that he needs to do and what he finds helpful.
I would have a look at the books available first and find the one that you feel is most appropriate to him. Because it’s such a spectrum some books just won’t feel relevent. The parent support group may have some good recommendations and any other groups locally, there may be a locally librray where you could look and borrow books specific to ASD.
I haven’t been on here in I think two years but we just recently had this diagnosis too. I am GLAD we have got it as it takes away a whole lot of that feeling of having done something wrong.
Since I am understanding Jamie’s way of thinking and his need for structure (we do alot of picture cards (Teachh) ) things have not gotten different but EASIER. I actually like the way he is. What helps tremedously is to read books from autistic people as it makes you understand it’s not a disability it’s just a different way of the brain to process things.
German Mama to my sunshine**Jamie Lukas 12/08**