Telling 12 year old DD about Asperger's

[Realmumstuff]

Hi, I don't know if I've posted this in the right place, apologies if it should be elsewhere.

My 12 year old DD has been seeing a counsellor for a few weeks as she has anxiety/low mood and mild depression.

Her counsellor called to see me last week without my DD. She explained that she has suspected for a few weeks that my DD has high functioning autism or Aspergers, my DD certainly seems to tick most of the boxes. My poor daughter has felt alone all her life really and my heart breaks for her. She just wants a name (as she says) for what is wrong with her. It's been a huge learning curve for us to make sure we are supporting her and giving her as much love as she will let us (she won't let us hug her ).

My issue here is that a close family friend's DD also has autism, my DD wrongly finds her strange (I know this isn't right) as my friend's DD talks about killing people (it's in a game she plays apparently) and my DD is just feels very uncomfortable around her. So she associates autism as what "our friends daughter has." and has already said that she isn't like her. I know this sounds awful.

So my issue is do we tell my DD? I have a couple of reservations telling her now. She has some exams in May, DD is such a perfectionist and can't cope with failure so I worry the stress of knowing will be too much for her. I know the spectrum is so wide and every child's autism is unique but I don't know if she will be able to cope.

I worry about the hurtful comments of her peers in school, she already told me everyone thinks she is weird.

On the other hand would knowing be a relief for her?

My head is a whirlwind at the moment taking it all in, any advice/experience you may have would be great.

Thanks

Will you be going down the autism assessment route? If so then you are going to need to tell her about the process. I told Ds when his first appointment came through. School had done the referral.

Ds is 15 and diagnosed last year. I won't lie it's not been easy at all and he is still in denial but I don't regret pursuing a diagnosis.

If you are going to go down the NHS route it can take a very long time. It took 15 months from referral to diagnosis for Ds but I know in some areas it takes longer than that. Privately it is a lot quicker.

You could tell your DD that everyone with autism is different."If you've met one person with autism, you've met one person with autism."

This might help to explain it:

the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

Thanks for replying.

Yes, we will be going down the diagnosis route. Probably private as we want to know the support we should be providing our daughter as soon as we can.

From what I've been reading we should be talking to our daughter, however her counsellor and I think she may not be strong enough yet. At this stage my DD and counsellor are coming up with coping methods for her and once in place we can tackle telling her.

She is an amazing girl, so super organised, beautiful, hitting all A's at school, has 2 scholarships, a talented artist and guitar/bass player. Online she is super kind, really helps her online friends when they are down. However face to face is very different. She tells me she can't speak or is only able to give one word responses and goes into a complete panic when asked to (she does talk - just not when under pressure). She also struggles so much when her 2 friends are off school, so much so that she went into meltdown (crying/shaking) when they were poorly last week that I had to keep her off too. My heart breaks for her, I miss hugging her (she is sensitive to touch).

I was also reading that some children/people do not want to label themselves and others are happy to label themselves as autistic, high functioning or Asperger's. I think she may struggle with some of these labels in light of our friends dd despite knowing it's such a wide spectrum.

At the end of the day we'll go with whatever makes our DD feel best. She should be so proud of what she has/is doing.

I think it's going to be a long road but at least we are on the journey to finding what will work for her.

Thanks

Have you seen this website. It’s for people like your daughter run by an autistic woman.
thegirlwiththecurlyhair.co.uk/

And this woman (Jo Grace) is autistic but only found out as an adult. She’s very approachable and often has private web chats with parents and children about autism, such as diagnosis and things that you are worried about in your post. I’m sure she’d be able to give you advice and your daughter some support (she doesn’t charge for supportive chats her day job is working with people with sensory needs)
You can find her on Twitter
@jo3grace
or via her website - www.thesensoryprojects.co.uk/

Quite an old article :
www.reachoutasc.com/blog/why-look-for-girls-on-the-spectrum-in-school

Sorry for the delay in getting back to you.

Thanks so much for your replies. Those links are very helpful!

We have the curly hair books at home and I will certainly be in touch with Jo Grace.

What with lockdown (and no meltdowns from DD in getting her to school ) we haven't told my DD yet, she is quite relaxed, getting on very well with home schooling and working hard and said she is enjoying working at home without pressure. We will tell her in good time when she needs to go back to school.

Before lockdown I told my DD's head of pastoral care (also deputy head) at school. I really needed advice as I was struggling to get my DD to go to school. Deputy head was great, her DD also has HF autism (very similar to my daughter, good to compare notes!), she has been a huge support to both me and my DD. If DD is having a bad day she arranges for her to work at home and makes special arrangements for her so the school is great. If she leaves I think we will have to go with her!!

Thanks for all your help.

I’ve contacted Jo and she is happy to help. I’ll pm her email address for you (she knows I am passing it on)
She also suggested “agony autie” . On Facebook I think.

@Realmumstuff: having trouble with pm on my phone. The email she has given is on the sensory projects website linked above.

We started talking "up" autism a good year before we told DS he might be autistic. You can dripfeed positive messages about it, and an empathetic and respectful attitude to autistic people, way before personalising it to her. We took the line that everyone has things that come easily and things they have to work much harder at and autism is just when the particular profile of things you find easy and difficult lines up with specific criteria.

My DS loves seeing autistic people on Britain's Got Talent, Gus on the Dumping Ground & elsewhere in the media.

Hi,
I'm autistic myself and struggled at mainstream school behaviourally and also with bullying (Which i still get now).
No two Autistic people are the same (there's a couple of simularitie's) and we need to raise more and more awareness about Autism as some people (thnk's to Dr. Wakefield) still believe autism is caused by vaccinations which simply aint true as proved by Scientists.
I've a couple of suggestion's-
Try and approach the National Autistic Society and ask them for support as they will be more than happy to help (DON'T DO ABA THERAPY IT'S CRUEL AND THEY TREAT YOUR CHILD LIKE ANIMAL'S and also dont use Autism Speaks search their history, it's appalling!
-Also approach your local council to see whether she could go to a speciallist school (But please be aware, they may in excess of 1 hour away mine was 1hr 25 mins away) The National Autistic Society could come in handy, as they can give you support and help you through the process.
There's a snag- once your child goes up to college and predicting your child will use home to school transport, theres a huge fee to pay for transport every year (there is by Wakefield Council anyway) that you've to pay every year.