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in limbo

christine

Hi, I have a 4 year old son who is waiting for an ASD assessment. The waiting list where I live is really long and it wont be until May next year.

I feel like I am struggling - I dont know how to deal with his behaviour and I dont have anyone to ask. I dont even know if he has an ASD or not. In so many ways he seems normal, but his speach is delayed and seeing the SALT, he is obsessed by animals, he pretends he is an animal in a cage, it doesnt matter where we are, he insists on being inside the trolley when we go shopping, and he howls at people when they go past - rather embarrasing, more so the older he gets. 

He has twin girl sisters who are 2 and a half, and although he is really effectionate and caring, he doesnt understand emotions and when he is hurting them. He has very fixed ideas about what we should be doing and where we should be going, and all hell breaks loose if it is not what he expects. He has funny ideas about his clothes, doesnt lke to wear new clothes and doesnt like the buttons on his jeans done up. He likes small spaces and sitting in boxes, and is sensitive to noise.

Am I just fooling myself thinking he might not be autistic? I just keep looking at him and assessing everything he does. Should I be trying to make him fit in more socially, or let him do his own thing?

Icant believe I am going to have to wait another 13 months, he was referred 12 months ago, so that will be over 2 years of waiting. Iis that normal?

Christine

x

  • I dont think he has OCD, but he may be dyspraxic, but I thought that was part of autism. I am not sure about all the terms. What is the difference?

  • Yes I feel ur pain about the Future I find myself crying and Wondering how we are going to get through this I have two other Children a girl of 13 and one of 2 and with my son It's a total new way of parenting  because he doesn't think like the girls and if we r going on holiday or anything like that we have to Prepare him for it weeks Before we couldn't just pack and go coz he would go on one.

    He has also got OCD and dyspraxia have u looked into that with ur son ? 

    Kelly x

  • Thank you for your replies, I am sad you feel the same as me bear, but releived I am not the only one too!! Not having a diagnosis means we cant come to terms with anyhthing, and I am sure you are like me in that Ii cant picture how his furure will pan out.

    Thank you for the tip on the app, Ii shall look into it

    Christine

    x

  • hi my boy was diaunased at 4 1/2 he is now 6 and things has got worse so we are going back up the family center , so what i am doing as we wait for an appoinment i am making a record of everything and theres an app on smart phones called Autism pro its brilleant have a look at may help?

    Also i would keep on at ur doctor if things get worse to try and bring things forward

    kelly x

  • Hi Christine, 

    I'm in the same position as you. My 4 year old started nursery last year and his teachers and inclusion officer are positive that he has ASD or similar so he has been referred for assessment. The problem I have is that he is only behaving this way at school. He ignores the teachers, won't give eye contact, won't play with the other children, he has no patience when things don't go his way. Apart from the patience issues, I have not had these other problems at home, and he loves playing with other children, shares nicely, doesn't land out (these children are in the same class at school). Despite telling the teachers about this, they are still adamant about 'their diagnosis'

    The waiting list in my area is 3-6 months. His case has to go before a panel first that meet once a month. 

    I started off being so strong and almost immune to all the things the teachers kept telling me, but everyday there would be a 'new' incident of this ignorant behaviour, and I've just got sick of hearing bad things about my son. He is golden at home, very well behaved, I can take him anywhere, and people comment (strangers in shops and restaurants) often comment on what a wonderfully behaved and well mannered little boy he is. I'm now constantly watching him nit picking at all his other little quirks, wondering if I'm in denial thinking there's nothing wrong.

    ive spent the last couple of months thinking I was the only one in this position, and whilst I can't offer any advice professionally, I can tell you that I feel exactly the same unsupported by all professionals and feeling in limbo. I just want answers and I want them now. I hope you feel some comfort knowing that you are not alone

    xx