Girl with suspected ASD (Aspergers type), how can we help

[Volare123]

Hi all,

It's becoming clearer that DD, almost 7 yo, has ASD (the Aspergers type). She didn't have any speech delay, no communication issues, no social issues until around age 5 - 6. Now at almost 7 she's struggling to make friends, particularly at school. I think some of the girls in her class do like her and tried to be friends but somehow DD is always alone, left out. She's clumsy socially and I think young for her age. She's feeling like she is different and doesn't understand what's wrong with her. Hence, from a super happy, confident, chatty and bubbly girl she's becoming more and more sad and withdrawn.

When she goes to playgrounds she always find children to play with (briefly) and she does crave social interactions.

She's only got one friend left now whom we meet once every 2 weeks as she lives about 15 miles away and only comes to her granny every 2 weeks. She's missing her all the time as she has no one else. She used to have loads of friends when she was 4 but some ended being horrible to her (hence we stopped meeting them).

I have no idea how to help her make new friends as her struggles have taken us all by surprise.

Can anyone relate to this? Is there any support available? I've put her on a waiting list for Brownies and I've searched local support groups online but couldn't find anything that would fit DD.

My DD is also autistic - similarly to yours in that she's smart, verbal and doing fine in mainstream education but doesn't always get social clues etc.
At this age I would keep talking with her, we found role play and trying to understand other people's perspective was helpful.
Self esteem is really important for young girls and maybe this can be dented for ASD girls by friendship issues. I'd try and make lots of opportunities for her to mix widely alongside other children. Find things she is good at and take her lead - you have probably worked out already that you also need to adjust your expectations.

Thank you, that's very helpful advice. All the best to you and your DD x

Anyone calling it "aspergers" is way out of date. That term hasn't been used for years. Hans Asperger was a nazi, for a start. There is no "aspergers type" of autism. It's just autism!

It's really important for her to connect with other kids who are autistic too. Find some playgroups/activities for autistic kids and you'll find other parents in the same boat who'll be delighted to find someone new for playdates.

Yeah, I think that's a description that isn't used anymore. Everyone with ASD is different - there are certain things that are considered with diagnosis and obviously someone like my DD is very different in a lot of ways to a child who doesn't speak and needs a lot of support everyday.
But 'mild' autism still is fully experienced by the person with it.

You'll also find parents who are in similar circumstances too.
Interestingly my DD has been diagnosed quite late (teens) and over the years on the occasions she's really connected with another child they have very frequently been autistic.

Autism is a spectrum and I wanted to highlight the fact that she didn't have the same struggles as let's say someone who was non verbal or had severe social anxiety or severe sensory issues.

We know a girl with ASD who is more typically autistic in that she is very inflexible in her play, has severe sensory issues and couldn't settle into a mainstream school hence is home educated. Also has severe meltdowns. Her needs are very different.

Okay, I would have been surprised if a medical professional used that term to describe her, but it's just you. Now you know 🙂

Just because a child has trouble making friends doesn't mean they are autistic. And you've just dug yourself a bigger hole there.

No, it's just me 😁.

She's not been diagnosed as the NHS doesn't think she meets the criteria for diagnosis (just yet).

Understood OP - my DD is similar but has lots of issues around sensory stuff too. It presents in a more subtle way.
I've probably advocated more for my DD than many of her peers needed, have volunteered to help with things so she could take part and have generally scaffolded her life in lots of little ways. But it's a joy to see her growing and maturing and becoming more independent. There's been a gap in emotional maturity with her peers but it is closing.

The school have expressed their concerns that she might have ASD. They said they think she's very literal and struggles with social nuances, which we can also see now. Struggles with group work and doesn't like loud noises.

I think it would nowadays be called 'high functioning autism', though that's not exactly a perfect name either really.

Is it social uncertainty rather than autism or are you noticing any other issues?

Could you expand on how you've scaffolded her life and places you've helped out? Any suggestions welcome!

Yes, high functioning or Level 1 autism is the new term. However, Aspergers was in use til 2014 (i think - around then anyway) and then it was dropped by DSM V (or was it 1V?!)

No matter - many professionals still think it should have been retained as it was a handy description to fit a specific group. The reason it was dropped was because it was seen as a bit superior - like a 'better' form to have.

Which of course it is not - all forms can have devastating consequences if not managed properly.

So - the first thing you need is a diagnosis. And if you can possibly afford to go private, do. It will be around £2k and you need to check any clinic offering is doing gold standard, NICE compliant with full parental interview, school obs, ADOS and follow up interview and recommendations.

Otherwise, get on the NHS wait list pronto but expect to wait up to 4 years. 2 years in some areas.

Level 1 autism is what's used the the diagnosic manual. But, yes, i think high functioning is widely used in the UK

It's mainly social and communication issues. The way she talks and interacts is very unusual, again we didn't see this until recently.

For instance she would start talking about unrelated stuff in the middle of a conversation I would have with DH. When she was younger she was talking in a high pitched voice, now it went the other way, it's quiet and monotonous and she babbles away a lot, doesn't know when to stop. She makes a lot of noises, grunts, I guess that's stimming? Paces around the house. This doesn't happen a lot but enough to be noticeable and I don't think it's typical for a girl of this age.

When she was 4 she seemed a lot more mature and articulate than her peers, now I feel she's stuck in that age maturity wise.

I've been to NHS twice in the last 2 years and they've refused to even put her on the waiting list as she's not struggling enough in their opinion.

Also she was seen by a private educational psychologist 6 months ago who also thought she would not fit the criteria for either ASD or ADHD for now. But she picked up on her social skills and also was leaning more towards ADHD than ASD, as she was very lively and was bouncing around the room a lot and had a slight attention deficit. However the attention deficit seems to have sorted out this school year as she's thriving at school.

By scaffolding I mean anticipating her needs and trying to meet them. For DD this looks a bit like:
Food is one - I feed her what she will eat and am low key about her trying new foods but also make sure if we eat out that there's something she will eat.
Low demand household - this was a bit of a happy accident really.
Stimming - this is important for regulation. Don't embarrass her about it - although I did talk to DD about whether she could choose not to do it (at High School)
Out of school stuff - DD has quite a low threshold for stuff outside of school, quiet time is very important. Really needs time alone to recharge.
Sleep - DD found it difficult to fall asleep. Improved with a weighted blanket.
Intense hobbies and interests - I try and keep abreast of her interests as she likes to talk about them (a lot)
I also often used to give her an out of social things she didn't want to do or a strategy to leave if she needed to.
I didn't know DD was autistic for all of her childhood so this was all just in response to what I could tell she needed.
ASD and generally sensitive children probably both benefit from a child centred approach in parenting.

Once you are further on your parenting journey you will realise that what you have described doesn’t actually necessarily equate to much in terms of the autistic level your daughter is on (if indeed she is autistic, which I’m assuming she is).

I have two autistic daughters who are very different with regards to their needs. However, the one who outwardly doesn’t look as if her struggles are as great is actually more affected.

Girls are still an underdiagnosed group unfortunately.
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DD was just 16 when she got the diagnosis, the accessor used the expression "what we would previously called Asperger" to give us an understanding of the range DD is falling into.

Lots of people don't like "High functioning ASD" either, it's a bit of a minefield.

What you describe does match DD. But at age 7 one assessor for ADHD dismissed her, her last therapist (she was 15 then) made it very clear that this should have been picked up and followed up, not just ignored.

In Y8, a hint of ASD was mentioned but then Covid happend. I think for us it was a godsend as it escalated DD's issue hugely.

If you can afford, please go private. it made a huge difference to DD's school life. Obviously GCSE adjustment are a long way out but I am 100% sure she wouldn't have gotten the grades if she would have been treated like all the other children.

We also changed our lives to make sure DD is supported. She can't handle surprises or impulse decisions. Going out for dinner means constant preparations and research. It can be restrictive but if it means I have a enjoyable dinner, I do it.
Others things are not going anywhere where there are tons of people, lots of noise, lights and sounds are a trigger. Surprises in general are bad.

Does she have any interests? There’s a bit of a myth that ASD girls aren’t into sport. If she is active, things like climbing, orienteering, roller Derby are great for quirky kids. Are school
supporting her making friends and developing socially? It’s unusual not to have other kids with neurodiversity in schools now.

@Anisty Very helpful info re getting a diagnosis. Thank you.
But there’s so many places offering them, if you’ve gone down this route, can you DM me any recommendations please?

She does have interests, she's got into climbing recently, she loves art/crafts but I wouldn't say she's obsessive about them.

The school have said she 'interacts beautifully' with the other children this school year but this is not what she tells us and how she feels. She doesn't have any friends and when I ask her who she played with, most if the time she said no-one. She does have brief interactions with some of the children in the playground but then she's alone most of the time. When I ask her why didn't she approach so and so and so (some girls she likes or was friends with before), she always says she can't find them. Can't believe she can't find anyone in the playground.

If she shows any talent at anything I would nurture that as much as you can (eg musical instrument/sport/dance/art). Confidence is so hard when social interaction is difficult, but having something she feels she’s really good at could really help.
Otoh my DD was so worn out by managing school that she couldn’t do any extracurricular activities. It’s hard OP x