heading towards ASD diagnosis...just need to chat

(17 Posts)
LizKeen Sat 02-Jul-16 18:30:09

Aside from DH and DD1s dad (my ex) I have no one to talk to. So this is mostly just getting it out.

Went for the parent appointment this week. DD1 is being assessed for ASD. She is 7. I have posted threads on here before and got SUPER help and advice which has helped us all massively. Almost to the point where I was feeling like this was in my head and we shouldn't continue with the process (I have a history of doubting myself). Things were so calm and under control. We have been having visits from a support worker which has felt like a bit of a waste of time, but useful all the same.

Of course it was all only calm because of the measures I had put in place!

Then school broke up for the hols and DD1 isn't coping at all. We are heading back into the rough patches. I have some ideas of some things to try and manage it. But anyway...the appointment....

I was totally geared up to hear that DD1 isn't displaying enough traits for a DX because that is what we were told at the initial appointment. But the woman I saw this time was so much more engaged, really listened. At the end of the appointment she said that in her opinion it is quite likely that DD1 will be diagnosed with ASD based on what I said, but obviously we need to wait for the next appointment, where they assess her directly.

I feel a bit shocked tbh. I have been dismissed so many times, by so many people. I keep hearing yes there are issues, but not enough to do anything, so to be told that it does indicate something worth diagnosing...I don't know how to feel. Happy that finally someone is listening and taking into account the fact that DD1 masks hugely...or sad that actually there is an issue that won't just disappear with maturity (which is the schools angle atm)?

There is also the fact that a lot of the questions were touching on things I had never considered before, and I guess had just accepted as normal.

I don't think that a DX is going to change anything dramatically. I don't see anything really changing at all.

I am worried that people will doubt it and say I am making it up or embellishing it, because she does mask it so so much. I don't know.

Any advice for someone in this stage of the process? Did others feel the same way? Does it get easier? Did anyone get told similar and then go on to be told there would be no DX?

If you have read this, thank you. I don't think it is very coherent. My thoughts are just tumbling around.

OP’s posts: |
PolterGoose Sat 02-Jul-16 20:17:01

Message withdrawn at poster's request.

LizKeen Sat 02-Jul-16 21:23:37

Thanks Polter. I think it was your suggestions that helped so much in recent months. The writing out of the routines was like a magic button had been switched. She has come on leaps and bounds with getting ready in the mornings and with things in general.

The summer hols are proving a challenge, but we are getting a white board and there will be daily and weekly schedules going up on that so she can have some structure.

Dreading her starting the new school year. It is a complete change in routine from all angles because of circumstances as home as well as in school. It is going to be tricky.

I am trying not to get ahead of myself but I am trying to figure out where to go from the DX if we get it. What it will mean in terms of pushing the school into action etc.

It just really came as a shock to hear someone say they think its likely she will be DX with ASD, after two years of being told there are issues and then dismissed by teachers and the GP and family. I wasn't expecting it at all.

OP’s posts: |
PolterGoose Sat 02-Jul-16 21:33:46

Message withdrawn at poster's request.

Bananasinpyjamas1 Sat 02-Jul-16 22:36:47

Even though I'd thought my 3 year old had ASD for over a year, being told that he was ASD still came as a shock. And yet, a lot of things got a lot clearer and easier. Instead of all the 'is he, isn't he' conversations, it was, OK, this is what we are dealing with, this is what the challenges are, how to we help DS.

Good luck OP, it's a shock but then you will probably find that this in no way defines your child's future, people develop SO differently, but it will really help your present. flowers

elliejjtiny Sun 03-Jul-16 01:07:22

We went through this with DS1 last year. He got his diagnosis of ASD aged 9. It didn't change anything dramatically but it felt great to be believed and I was more confident in voicing his needs after it was official and I wasn't just a slightly deluded over protective mum. He likes having a diagnosis because he likes going to the local groups for children with SN and meet other children who have ASD.

LizKeen Sun 03-Jul-16 09:27:40

Thanks everyone. Yes its lovely to be believed, and actually also to be given the time to really go into the detail of her struggles, especially socially, which wasn't really touched on in the first appointment.

I have looked up some ASD youth groups in the area and I will speak to the support worker about a referral. But I think they have broken up for the summer now.

Do you always tell people about the dx? Or ony if its necessary?

For example, DD1 has group swimming lessons and she loves them, is coping great with them, so there would be no need to inform them of the dx? Or I should anyway?

Sorry that's probably a daft question.

OP’s posts: |
PolterGoose Sun 03-Jul-16 09:46:06

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PolterGoose Sun 03-Jul-16 09:48:16

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finnishbiscuiteater Sun 03-Jul-16 10:45:32

I had to join in on this thread as we've just got the diagnosis for DS1 (15).

.I don't know how to feel. Happy that finally someone is listening and taking into account the fact that DD1 masks hugely...or sad that actually there is an issue that won't just disappear with maturity (which is the schools angle atm)

This is exactly how I feel - so I'm guessing that means that it's OK to feel conflicted about it. What's great is that DS1 feels totally happy about it.

TBH I think that for me it felt more that other people expected me to feel upset, rather than me actually feeling gutted.

DS1 is defintly going through phase of experimenting with his autistic identity, which has led to much more autistic behaviour at home - but he's continuing to mask at school.

We've been really open about the diagnosis (As DS1 wants to be open) But I think that we'll play it by ear and decide which each person if we need to tell them...

Ineedmorepatience Sun 03-Jul-16 11:09:52

I am worried that people will doubt it and say I am making it up or embellishing it, because she does mask it so so much. I don't know.

This stood out for me, Dd 3 is the queen of masking and we have been judged by many people over the yrs (mostly teachers).
When Dd3 went to secondary school because people didnt take us seriously it all went horribly wrong and she only lasted 2 terms before we stopped sending her. Imagine how it is for girls without a dx! School is extremely difficult for many children with Asd so the more information you can give them the better.

Good luck flowers

LizKeen Sun 03-Jul-16 11:16:26

Its so good that your DS feels happy about it. I think with older kids, if they have already worked out they are different and they have things they struggle with, hearing that there is an actual name for it, and things that can help, can be a relief.

I feel like I could probably be diagnosed myself...and I think my teen years especially, could have been a whole lot better if only someone had tried to understand me.

With DD only being 7, I am unsure how to proceed. She knows about the appointments obviously. I have told her that some people's brains work a bit differently and they might find some things tricky and need some help with things. And that it doesn't mean she is bad or weird, just that she might need some help with some things. I don't even know if that is right, but I needed to tell her something.

She had already said she feels like a weirdo and like she is the class weirdo. She feels like her body doesn't work properly. That was a few months ago now. So I am hoping that putting a name to it will help her.

I don't know if she will be proud of it, or want to be open about it though. She is quite a private child and doesn't like people knowing too much about her. I don't think she would want me telling her swimming teacher, for example, so I think it might need to be on a need to know basis, at least initially. We have been open with family and friends so far, but no one has really been discussing it around her because she is so private and gets embarrassed and upset easily. Its a fine line to tread and I think we will just have to take it one step at a time.

OP’s posts: |
LizKeen Sun 03-Jul-16 11:26:12


Did you move schools or do you home school now Ineed?

Secondary is really worrying me, I have to say.

I could have cried when the woman I saw this week said some stuff specific to girls with ASD. About how it is masked a lot, about how it is often picked up later because they learn behaviour that hides it. After being told by the GP that she can't have dyslexia because she can read, and she can't have ASD if she behaves sometimes (I don't think she has dyslexia, but a teacher had concerns previously) and everyone saying all this worrying stuff and in the same breath saying that she didn't need referred...to finally hear someone confirm that ASD can be masked, it was such a relief.

It makes the journey to this point pretty shocking tbh. There is a serious gap in knowledge among HCPs.

OP’s posts: |
PolterGoose Sun 03-Jul-16 11:38:36

Message withdrawn at poster's request.

finnishbiscuiteater Sun 03-Jul-16 11:42:02

for ds1, although we didn't get an official diagnosis, I've thought for a long time that he was ASD, so used phases like 'your brain works differently' when he was struggling with stuff.

I am fortunate in that I work with lots of HFA adults, many of whom didn't get a diagnosis until adulthood. They gave me good strategies to help DS1 mask stuff when he needed to, and made it clear that explaining early on that he was different and that was great, was much better than waiting for him to realise it himself, because the time spent feeling like you're odd without knowing how to talk to people about it was the most damaging.

Ineedmorepatience Sun 03-Jul-16 13:43:22

We home ed now and it really works for us although its not for everyone.

We went down the same route as Polter and started with talking about all the things she is so good at when we explained about her diagnosis.

We have been trying to work on not masking and being who you are. Masking is really hard work (speaking from experience) and it can lead to depression and other MH issues.

My friend has a Dd who is much younger than Dd3 and while she was little we worked really hard praising her and encouraging her to be herself and to let the world know if she was unhappy. She is much less of a masker as a result and is coping better so far at school with some support. I hope she is able to continue to be able to show school staff when she is unhappy because that was the biggest problem we had with school, they simply didnt look beyond the mask.

youarenotkiddingme Sun 03-Jul-16 16:37:49

I agree there s no right or wrong way to react. I finally felt relieved that what I'd known since DS was 2 was now official!

For my DS it's been a lifeline towards having an identity. Rather than the child who feels different he quite openly says he's autistic and what that means.
It's also opened up access to groups for him. He attends the NAS locally - he's like a different child amongst his autistic peers.

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