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Mums of daughters with Aspergers?

(22 Posts)
lottieandmia Sun 13-Nov-16 15:13:43

Can you help? I have 3 dds, the oldest has classic autism, dd2 is NT and dd3 has a number of issues including ADHD and dyspraxia. She's 7 and as she's getting older I think she seems more and more likely to have Aspergers. She is under a paediatrician but I'm getting concerned about how to get a diagnosis. Her school thinks she is on the spectrum. I don't think she fits an autism diagnosis because her language development was normal. She is, in fact quite articulate although she struggles with numeracy.

Can anyone tell me anything about diagnosing girls of this age? How you knew? I also strongly suspect that I myself have AS btw.

PolterGoose Sun 13-Nov-16 16:43:19

Both me and ds are diagnosed autistic (ds's diagnosis is Aspergers, mine is ASD) and had no significant language or speech delays. Our language/communication difficulties are more subtle, mine worse than ds's I think, not getting jokes, missing subtext, literal interpretation, poor body language (expression and interpretation).

Tania Marshall, Samantha Craft (Everyday Aspergers) and Cynthia Kim's 'Musings of an Aspie' are all good resources.

lottieandmia Sun 13-Nov-16 18:42:09

Thank you Poltergoose. I will have a look at those. I've done the CAST test and she gets a score of 20. She is extremely naive and often zones out. Like me, she doesn't pick up on things like people's intentions. She's very extrovert though or at least she comes across that way. I'll have to do some more reading.

lougle Sun 13-Nov-16 20:22:37

That's really interesting. DD2 scored 25 if I used my knowledge of her subtle routines, etc., or 22 if I took out anything which requires intimate knowledge of her. So either way, 7+ above the cut off and I'm still worrying if she warrants assessmentgrin.

I have done a CAMHS referral, but if you're under the paed you should be able to ask them to refer on.

lottieandmia Sun 13-Nov-16 22:35:45

I suppose it depends on whether it would help to have a dx. In my daughters case I think her differences and sensitivities are becoming more stressful for her as she gets older. I think there are times when she could benefit from social stories.

lottieandmia Sun 13-Nov-16 22:36:48

How old is your dd lougle?

Manumission Sun 13-Nov-16 22:44:32

Language delay is not essential for diagnosis. (There used to be a distinction on that basis between HFA and Aspergers dxs but now that have been merged under the heading of Autism and Aspergers is no longer an available dx under DSM-V.) So don't worry about that too much. As PP said, language issues in Aspie girls can be quite subtle.

lougle Sun 13-Nov-16 22:54:23

She's 9.

Manumission Sun 13-Nov-16 23:11:42

I suppose it depends on whether it would help to have a dx.

Three thoughts;

Secondary transfer can be challenging with an ASC - already having a dx will make it much easier and quicker to access help and resources if needed.

Understanding yourself as much as possible is always a good thing.

Earlier diagnosis is almost always better than later. (Secondary issues are frequent in undxed adolescents.) DD would have benefited hugely from a more timely dx.

Moon05 Sun 13-Nov-16 23:36:03

My DD was diagnosed with aspergers at 10. We waited and wondered for a long time before going for a diagnosis. She had very good language development so that was not a concern. She coped well at primary but it struggling having just started high school so the diagnosis has been really important in getting support. Maybe do some reading on how girls present differently as I was unsure that my DD fitted certain criteria until I read more.

MrsSthe3rd Mon 14-Nov-16 12:03:56

Both myself and DD are diagnosed. She completely fell apart at Secondary transition and is now in an appropriate school.

I was left to struggle throughout school - I can promise you it was hell. If you have the option to get the diagnosis earlier, then I personally feel it will be very beneficial.

Ineedmorepatience Mon 14-Nov-16 16:47:57

My Dd3 was dx'ed at 9 with Asd, she doesnt quite fit the aspie profile more a PDA one. She was significantly failed by her secondary school and is now home ed.

I would get your Dd assessed now, it took 3.5 yrs for us to wade through the system so the sooner the better in my opinion.

Some schools have difficulty spotting Asd in children with a diagnosis never mind one without so yours have been great to spot it.

I would go via your GP and request an Asd assessment.

Good luck flowers

lottieandmia Tue 15-Nov-16 06:59:19

Thank you all so much for your replies. I'm going to have to do some more reading and put it to her paediatrician, I think. For some reason, where I live the professionals seem more reluctant to diagnose ASD than anything else.

I think the system is flawed because they disregarded ASD on the grounds that her SALT assessment was normal. I think that if a label fits, it should be given.

One of the things that concerns me the most is that she seems quite immature and very naive for her age. I would say that emotionally she's more like a 4 year old.

MrsSthe3rd Tue 15-Nov-16 07:14:52

Yes, that last paragraph is my DD!!

We were able to explain it away in her younger years, however, as she got to upper Junior School, the differences really started to show. And obviously, our DD went on to really struggle.

They're probably reluctant to diagnose due to the possible cost of putting support in place. Although, support should never be diagnosis led, the sad reality is, it generally is.

lottieandmia Tue 15-Nov-16 08:06:21

Hmm, well I'm not letting this go. Although I did have to pay for a diagnosis for my oldest dd who's very severely ASD because I wanted her to start ABA so that was a slightly different situation.

She already gets a lot of 1:1 at school. What kind of support is available for children with more subtle issues?

MrsSthe3rd Tue 15-Nov-16 10:16:11

In all honesty, support should be based on her needs. My DD did have to 'fail' before appropriate action was put in place. However, not all situations are like ours.

Has there been any recent assessments by an Educational Psychologist, Speech & Language Therapist or Occupational Therapy?

Have you kept a diary of a typical day or anything that stands out to you as different from other children her age?

I don't know how your DD presents, but it's widely known that females can present quite different to males too.

lottieandmia Tue 15-Nov-16 12:04:24

Well, she was diagnosed privately with dyspraxia by an OT 18 months ago and continued to struggle at school and needed a lot of 1:1. The school had referred her to the umbrella team and the paediatrician who took her case on said that she suspected ADHD which she was subsequently diagnosed with (inattentive)

She is a bit behind academically, mainly in numeracy. Her reading and writing have improved a lot with help from school. She appears to be able to make friends but as I said she is quite naive and more like a 4 year old really. She can become inconsolable about things like a song or a film.Toy Story 3 had a really bad effect on her.

The main thing that concerns me is that she often can't understand when I tell her she can't do something or why she needs to do something. She will keep on and on or argue with me about something like touching a dog she doesn't know. She says she doesn't believe the dog could be unpredictable. She's quite articulate - I would say her use of language is at least age appropriate. At the moment she is being quite difficult about going to bed and she has a tantrum every single night about it. I don't think this is particularly normal for a 7.5 year old.

So these are just a few examples. She's not aggressive at all but I feel she is slightly out of sync with other children her age.

lottieandmia Tue 15-Nov-16 12:08:10

Ed Psych assessment was thorough and found her to be of average cognitive ability but her main problem is with executive functioning.

The SALT assessment resulted in a report which says her language development appears normal.

lottieandmia Tue 15-Nov-16 12:09:55

Also she has a lot of stims but she always has had these.

Frusso Tue 15-Nov-16 19:58:52

Dd1 has an ASD dx. We sought it when she was 8, and she got it a year later. We always had suspicions but she flew beneath the radar as far as school was concerned. She masks well, and is very articulate. She does however have huge anxieties.
And as pps have said that transition to secondary hits hard with girls. And I wanted something in place as a safety net in case she falls.

Her school have put her on the SEN register, and I understand, from the secondary we have chosen, that because she is on it, she will have extra transfer sessions. Which should help to elevate her anxieties.

imip Wed 16-Nov-16 18:45:19

Dd8 has ASD. In old terms, she would have Aspergers as she was verbal at 3. Actually, she was very articulate, speaking in sentences early, able to communicate her needs.

As dd gets older, I see her speech and language kind of regressing somewhat. She frequently talks in baby talk - a sign that she is really anxious. She will often become nonverbal also, and she will repetitively squeal and scream. She is cognitively able. In assessment her literacy skills are average, her mathematical skills are high average/superior. Things like executive function, working memory are all average. If I mention that she has ASD to anyone, they are genuinely shocked. At home, dd is violent and aggressive. Very challenging - she masks well at school but cracks are starting to show.

I also suspect dd4 is on the spectrum. Her language is age appropriate, however, I base this all on my knowledge of the days of impairments. While it seems to not cause a probl ATM and she loves reception, she is very repetitive at play and doesn't actually really 'play'. Reading pp, it shows me how important it is to seek a diagnosis now before dd4 encounters challenges. I am, of course, happy to be proven wrong.

I have 4dds and what it has shown is how important copying behaviour is in masking ASD. I think dd4 has probably benefited a lot from this.

mumzuki Fri 18-Nov-16 10:51:50

Are you in England? If the school agree that she shows traits of ASD, it's worth speaking to the SENCO specifically about referral for assessment and diagnosis. In my area either school or parent can refer through CAMHS single point of access; the initial referral form is available online. I discussed referral with DD's SENCO (DD is 8); we agreed the referral would go from school but I filled in most of the referral form, she then added a bit and sent it off.

We heard back fairly quickly with a further more detailed questionnaire, one for us and one for the school; the SENCO sent me a copy of what she'd sent back.

I know CAMHS waiting times are very long, so I'm assuming we won't hear anything more for months at least... DD is 8, which is average age for girls' diagnosis (for boys it's 3). I'm not expecting much additional day to day support in school, but want to be ready for transition to secondary as this can be extremely challenging for pupils with ASC. At the moment DD is doing fine academically, but her social interaction is a disaster. I'm very lucky as well that her SENCO is amazing, and that she's had very caring teachers who have understood her difficulties and supported her really well.

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