People arent seeing the full picture

(11 Posts)
Bleepbeepdee Mon 16-Jul-18 12:33:35

My daughter's supsected of having autism and is on the asd pathway?

We had her portage worker came round for the first session, DD was in a good, friendly mood... so she cooperated on her terms (as always) but she completed the games and only had 3 tantrums in the hour.

During the visit i mentioned my nephew who has asd and would be considered low functioning. The portage worker then told me that her colleague has worked with my nephew and from what she's heard my daughter and nephew are very different, they are but its more of a severity issue, they have the same type of behaviours but DD can speak (has a great single word vocabulary) and she's not as disruptive.

When leaving she said if DD is autistic, she'll be on the high end of the scale, saying she'll be classed high functioning.

I want what's best for my daughter and for her to be able to do just as much as any othe child, and that's why I feel like an assumption can't be made on an hour with her...
She has good days where she might only scream a few times and is wanting to read books with us and follows simple instructions.
Then she has days where she will sit outside alone all day tipping water between cups, refusing to eat, drink or be cleaned and headbutting the floor if i try offer anything, ignoring everything we say, biting and scratching us when we have to move her.
There's days she wont do anything but sleep, and apparently it isnt a cause for concern because she is sleeping, but she can sleep 18 hour nights and go back for a 2 hour nap.

Im stuck feeling like am i a terrible parent who just control my child because nobody seems to see the rest of what she does. Or doesnt think that the behaviour is concerning.

OP’s posts: |
tartanterror Mon 16-Jul-18 13:03:21

Just remember that you are the one who knows your child across all settings. The portage worker will have one view - of many - and she will feed into the process but the paediatrician and the SALT will be above that in the hierarchy. They will also hopefully use standardised tests, rather than spending an hour with the child. Keeping a diary really helped me. I was able to note down issues in/out of professional meetings that were relevant. eg DC was on good form for X's appointment today, but when we left did X, Y & Z. If you don't tell the professionals all of this, then they will not see it but if you do tell them they will listen. A diary is a good way of keeping track as it is hard to remember useful examples otherwise. good luck

KateGrey Mon 16-Jul-18 13:12:51

Keep notes, photos and videos the lot. Do you have input from anyone else? I have two girls on the spectrum and both diagnosed. At first I wanted to believe what people said about my girls (things that were an issue but made into a non issue). But never forget you are the one that really knows your child. I really dislike people who assume that high functioning autism or “mild autism” only mildly affects the person as in my experience it really doesn’t. I’ve found the labels of low and high functioning not helpful at all. My youngest has very little Speech so classes as “low functioning” but has no issues using the loo, no self harming behaviours. Her sister is high functioning but suffers with anxiety. Her autism is not mild in anyway.

The sleep could be that somedays she’s burning herself out and is stressed so is sleeping a lot to regain some kind of balance. Mental burn out is very common in people with autism.

Don’t let people marginalise your concerns. Keep repeating them, keep noting it all down. This will sound awful but I find if it’s not obvious the professionals buy into the parents. Some I know come across in a way that has them labelled neurotic. So professionals don’t take it seriously whereas if you’re cool and calm people tend to listen. That’s only my experience.

Good luck

BackforGood Mon 16-Jul-18 13:17:27

The portage worker will be well aware that her visit was a 'snapshot' and will also have been taking in everything you said. this was just a single visit. Everyone who works with children in this way knows that it is a 'snapshot' of that day and that time, and knows full well the behaviour might, or might not be typical. That's why the conversations they have with all the people that know her well - ie you - are as important as the play / interaction / observation of the child.

tartanterror Mon 16-Jul-18 13:18:43

Yes I totally agree with Kate. You have to be completely convincing and allow them to tick the box which means they feel confident that poor parenting is not the main cause. I'm fairly sure that I know a few children who had delays accessing services because their parents weren't good advocates. If you struggle to keep calm and collected, get a friend to help you in meetings.

Bleepbeepdee Wed 18-Jul-18 10:45:31

Thank you all
Ive been keeping a log of what shes been doing and have some videos of her too.

I feel a little easier now. We had another session and she said how interesting DD is, she is clever to the point she convinces you she understands when she doesn't.
I feel like im being listened to more.

OP’s posts: |
zzzzz Wed 18-Jul-18 11:17:59

Message withdrawn at poster's request.

Bleepbeepdee Wed 18-Jul-18 11:35:41

Im worried that because she doesnt show very severe behaviours, the rest of what she has difficulties with could be overlooked.
Like she talks well but she doesn't understand, and i worry that people aren't seeing that she's not understanding, she's just using repeated phrases.

OP’s posts: |
zzzzz Wed 18-Jul-18 12:06:08

Message withdrawn at poster's request.

zzzzz Wed 18-Jul-18 12:08:34

Message withdrawn at poster's request.

CityFarmer Thu 19-Jul-18 17:32:59

I had this worry - what would portage gather from a short assessment, especially if she was in a good mood/period.
Same with SALT assessment, i couldnt go, so her dad took her. She never acts up with him, is good as gold. With me, they'd get proper picture. Ive since had both reports and SALT could see she was just repeating learnt phrases and jargon. Portage got her spot on, even tho keyworker said she hadn't stayed very long. Hopefully theyre as good as mine amd get it all correct

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