'Not autistic'

[MooMummyMoo]

I am just looking for a bit of clarification from people that know a bit more than me really as I am quite new to Autism.

My DD was seen my someone today - not to diagnose her but an inclusion officer who helps the school (pre school in this instance) deal with pupils with any additional needs.

I am pretty sure my DD has aspergers/high functioning autism. The man who saw her today said she was 'quirky' but didn't think she was on the autistic spectrum as she made eye contact, could describe items when asked and also played with another child (the other child was her sister).

As I say, I am new to all this, but I didn't think these sorts of things always were linked with autism. Am I wrong or is he looking at autism through a narrow parameter?

DD1 can maintain eye/facial contact when dealing with people she does not know but needs prompting to engage with others. Hospital CAMHS picked it up that the reason she could at times with certain people is because it was a strategy she used to try to "read them" so to speak and how she should respond as she struggles with tone of voice, understanding meaning of speech, intentions and social cues.

My son who is going through the diagnostic procedure at the moment has perfect eye contact but has huge anxiety issues and is fearful of everything. His cousin who is 3 days younger than him never gives eye contact and has no fear about anything and is so super confident of herself and everything around her and is also going through diagnosis procedure but in different areas of the country and both present so so differently but sure they both have HFA!! At the beginning we were told because my son has eye contact he isnt autistic and my brother was told because my niece is so confident and has no anxieties she isnt autistic!!! No 2 children are the same but I think the professionals like to pigeon hole them all into one category.

Thanks everyone for sharing your experiences. I saw the GP and was incredibly lucky - it turns out her own child has Aspergers so she was very knowledgable and knew how it can present itself so differently. I may well get fobbed off again when I see the paediatrician but I feel happy that at least someone has listened and could see what I see.

Do not take what the inclusion officer says for granted, they are in no way trained to diagnose. Ours told us my son didn't need support because he was happy at nursery. Turns out he needed max level of support.
Insist for the GP to refer you to a specialist paediatrician.

My heart sank when I read your message - there are so many catastrophically ignorant professionals out there! He cannot possibly write off autism as a possibility in one session! Whether she has it or not is not really the point - she shouldn't be closing the door on the possibility after such minimal investigation! It's utterly ridiculous. DD's diagnosis took 3 years. This was an utter disgrace (thank you CAMHS!) and there is no need for that length of delay, but a through autism diagnosis process in our area (disgracefully it varies depending on where you are in the country) involves interviews with parents, teachers, observing the child at school / nursery, meeting them separately to that for some play assessment 2 or 3 times, completion of the Cambridge questionnaire by parents and school, and all of this should be done by more than one psych - and after all that they might still get it wrong (hello again CAMHS!) but anyway, my bitter and twistedness aside, if you think she might have autism, it's a very good plan to persevere and get the proper diagnosis process started. And to talk to the national autism society helpline before you do so as they are so helpful and can talk you through pitfalls etc and give you an idea of what should happen.
Good luck! And well done for not just accepting that and giving up. I do worry for the kids of parents who are struggling or not so assertive, these bloody negligent professionals tell them it's not autism after meeting the kid for 5 minutes, the parents accept it, and then a kid with autism goes undiagnosed and misunderstood. Woeful.

Xxx

Very similar experience to highland! Took over 5 years, but we finally have the diagnosis. It doesn't change her at all, but that all important word means we can access a wealth of experience, support and help for us all, which we've not been able to do before now. We only have ours because I would not let it lie and complained about the paed who fobbed us off twice - once when she was three and again when she was five. One assessment in 10 minutes each time! Send on a parenting course and surprise surprise, I was right all along! Thankfully the silly cow is no longer practising in our area!

Trust your instincts, it's the most powerful thing you can ever do. Good luck!

Yep. Amen to that re the instincts - so many "experts" would have royally fucked up were it not for the already exhausted and overwrought parents who knew better. You really do know better. Trust yourself xx

A parenting course?? Jesus Christ.

Oh yes highland, she wouldn't even accept the re-referral until we had done it! Thankfully we had a fab parent support advisor who had the info, went throught it with us, so we could say we could tick the boxes (we couldn't do the actual course as it was only in the day time and we both work full time!) I bloody hope she's not providing the same crap service elsewhere now and has either retired or changed her line of work!

She told me I was an over-anxious mother and that my daughter did categorically not have autism! Well love, you've been proved wrong!

I didn't 'know' she was on the spectrum, but I knew it wasn't just our parenting and 'normal' behaviour. I knew there was something more, and I just wanted to be able to provide the right environment and support for my child, no matter what that may be. The relief when they confirmed my suspicions was huge!

She sounds like the Tosser who was in charge of our diagnosis. Jenny someone or other. Have wiped her surname from my brain as inspires too much rage and I need to avoid being arrested for some kind of violence. Hideous sanctimonious cow.
As you can see I'm totally over it and harbour no grudge or ill feeling at all

DD was advanced verbally, has always had good eye contact, likes hugging and played happily at pre-school. She also has an asperger's diagnosis.

What I would suggest you do is google one of those questionnaires, and do it for yourself. Then go back and for all the areas you think she fits the diagnosis, start to note down examples of when she shows this behaviour. Keeping a diary is another good idea.

With language; it can seem advanced but is it much more than good repetition. Eg. I said, "Presumably Emma did it." to DH. Emma (not real name) piped up "Presumably not." Which we thought was clever, but was really just echoing.

I once met an adult with very severe autism and several other complex disabilities. Whilst talking to me and somebody else, her eyes flitted in every direction other than at us - they were constantly moving, but clearly it was completely impossible for her to make eye contact with us.

DS, on the other hand, has recently been diagnosed with high-functioning autism and learning disabilities aged 9. He was dx'd with dyspraxia and sensory processing disorder aged 5, so the addition of a formal ASD dx has been a long time coming even though we suspected it all along. The eye contact thing was a major hurdle for us too, because he can make very good eye contact, just very much on his own terms. And he can be sociable, can play nicely etc - when it suits him! I do wonder if the eye contact thing is much more relevant to severe cases of autism, and less relevant to high-functioning ASD.

We saw a new paed a few weeks ago and he didn't bother to hide his amazement that DS's autism dx has taken this long, when apparently to him it was exceptionally obvious. But we too got delayed along the way by all sorts of 'helpful' folk, including the community ed psych who said he didn't need a Statement when he was just starting school (everyone else disagreed and he got full-time 1:1) and then wrote a report about him a few months ago to say how well he was doing - and she hadn't even seen him for three years!!!

Keeping a diary or doing one of those questionnaires are both really good suggestions. And I agree that your inclusion officer was being decidedly unhelpful - he probably shares an office with our old community ed psych!