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Pre-diagnosis frustration asd(5 Posts)
Just needing to let off some steam really.
Current situation is I have a 14yo ds diagnosed with asd at 7. The years before diagnosis were a nightmare as I felt I was constantly in battle with the school and my parents as they just couldn’t see what I could. I think sometimes us as parents see and feel autism so much more as we are missing a huge social connection and we just feel it. The lack of eye contact, natural emotions, sensory overload etc..
Anyway moving on, I’ve since had 2 more dds one who is 4 who is very nt (although slightly quirky) but perfect communication and social skills. But my youngest dd who is 2.5 is currently going through evaluation with paediatrician as she has social and communication delay. She can sort of sing songs (not very clear) she can say some single words now but they are very hard to understand. Anyway I KNOW she has autism, I have known since she was about 10 months. She is currently having portage sessions but these will soon stop. The thing is as she develops more words my parents like to act as if there is nothing wrong and it frustrates me to the point of tears. Nursery don’t witness any problems either (been there for about 12 short sessions) which is strange because I can see the issues on tapestry pictures also. Her behaviour for me is shockingly bad, she is so touch sensitive and will not allow me to help her do anything but as communication is so hard she gets over stressed and hits her face over and over. She growls at me often and refuses to talk. She rarely looks when called. I can’t cut her nails, comb her hair, get her dressed, change nappy etc....she hurts her sister randomly and unprovoked. Severely limited diet. So much is going on that I witness.
Today my Mum happy told me she thinks my dd is Just naughty...scream!
I know what I see..I wish it wasn’t the case but I feel that my fight isn’t with the disability but it’s to get it recognised, again.
paediatrician is doing the standard watch and wait. She did notice the social and communication delay, lack of eye contact and not responding,.but didn’t witness any behaviour problems at the assessment.
I have reordered videos of her self harming, head banging, random outburst, echolia, spinning, flapping etc...
This time is so hard...I remember the day ds got his diagnosis, the relief was huge, I thought I would manage better this time but it’s terrible hard and I just would like to feel support from people around me.
I imagine many others have felt similar at some point?
Honestly diagnosis made no difference, family didn't believe ds had it and that didn't change with diagnosis. Still had to fight the school even with a diagnosis.
Getting diagnosis was a bit anti climatic tbh as nothing changed - that upset me more
I understand. I have an 11 year old ds with a diagnosis of aspergers syndrome and a 3.5 year old ds who is very similar to your dd. No diagnosis yet. He has had a hearing test to rule out hearing loss and we are waiting for a referral to the community paediatrician.
Oh yes I well understand the frustration you are going through. We suspected autism when our son was 3. Although all the professionals recognised his delayed language development and he did have a statement of SEN for this, every time we raised our concerns about autism we were fobbed off. One psychologist said he definitely wasn't autistic on the basis of one hour's observation. An experienced teacher said on several occasions that there was nothing wrong with him, he was just naughty/awkward/lazy. Well meaning friends said "Oh, he'll be all right," etc.
He was finally diagnosed with ASD when he was nearly 8.
It's a long and weary road OP, but keep going. You will get there in the end.
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