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Can you tell me about your GIRLS with autism please?

127 replies

Whatevermission · 13/05/2019 17:11

And also, what is the benefit of a diagnosis

DD is 8 and I am wondering;

Still tantrums like a 2 year old
Cannot compromise, has to be her way or see above
Has few friends
Very bossy/controlling
Lots of sensory issues earlier in life though; mostly ok
Likes tidy ordered room
Doesn't sit still/always banging stuff/fidgeting/clumsy
Doesn't listen/asks questions but doesn't wait for answer
Very academic
Very

OP posts:
coffeegrounds · 14/05/2019 10:29

Not sure what I did to annoy coffee so much

You haven't annoyed me?

You have simply described what is considered to be within absolute normal range for a 10 month old.

Looking for Autism and ADHD in such a young baby isn't healthy or productive. Like I said way back, enjoy your baby.

coffeegrounds · 14/05/2019 10:32

I’m sure many people who have had a difficult baby have wondered this at some point and can relate.

You haven't described a difficult baby though. Honestly, relax. 10 month old babies do move about a lot. They also learn through sensory play. You have said she is meeting milestones, so aside from sensory 'issues' (total normal part of development) and moving about a lot you literally have given nothing that indicates there may be a problem. I do think that a visit to your GP might be helpful, because if you spend your daughters life looking for problems you will miss her growing up.

FlorencesHunger · 14/05/2019 10:34

Dd was diagnosed asd and adhd last year at 8yrs old. It took from age 5 to come up with a diagnosis as she is in their words complex. It's hard as she is great to be around and I think most people can't see her autism so her needs aren't being acknowledged as they should and are being overlooked.

She's sociable, makes eye contact and talks all the time but also keeps her own company alot at school.
Only plays with people if they are actively joining in with what she is doing, like digging holes.

She doesn't have any specific friends but it's not on her radar.

She's an anxious child, things like adulthood and other life things are too abstract for her to understand. Naturally, but it's on another level.

She only understands clear cut English, no collequallisms/turn of phrases, metaphors etc (speech and language therapy picked told us how to speak to her)

She doesn't have melt downs, she's emotional.

Will hit herself when frustrated.

Academically she is struggling. Reading level of a 5yr old but she is smart just not book smart.

Sensory issues, smells, loud noises.

Sensory seeking, movement(proprioceptive), putting things in her mouth.

Poor working memory

Mostly she is in her own world and hates being taken from it and that's where the trouble comes from.

She's immature for her age.

She is better with routine such as sleep and meal times.

Interested in this thread?

Then you might like threads about these subjects:

PerfectPeony2 · 14/05/2019 10:38

Coffeegrounds I was summarising. I can assure you she is very difficult and I have posted a lost on here in the parents of criers thread. I’m not missing her grow up at all just doing a bit of research as to why she is so challenging because it is very hard work in comparison to a lot of other children her age. Thank you though, I appreciate your comment and that she is young and at this stage it is better to relax.

Whatevermission · 14/05/2019 10:48

iwillwear DD was bullied horribly through YR and Y1. That was when he sensory issues were at there worst. I have been told by school counselor (new school) that she has PTSD and OCD. I put all her troubles down to the bullying. Only NOW am I beginning to think that these issues were there already but exacerbated by the bullying. And maybe she was bullied BECAUSE the kid recognised her differences.

I also really sense that people don't like her. Teachers and other adults all seem to have an aversion to her. She was never protected by staff at her 1st school when she was bullied. I notice this because it is a contrast to how adults have interacted with dd1.

She is very LOUD and inserts herself into adult conversations. Or just makes loud stupid noises, so people can't have conversations around her

At home. Not like this at school apparently

OP posts:
Whatevermission · 14/05/2019 10:59

As a BABY, the unusual things were;

She wouldn't breastfeed. Would spit out my nipples and scream and scream. Eventually gave up and formula fed

Lots of ear infections

Slept from 8pm to 8am almost from birth, without any 'training'. THEN, aged 1 just stopped going to sleep

Spoke from a very early age, big vocabulary for age

OP posts:
BiddyPop · 14/05/2019 11:15

ASD (formerly known as Aspergers Syndrome - DX was just as the manual was changing) and ADHD here.

DD is now 13, DX when she was 5.

As our only DC, and living away from wider family, we just assumed she was hard work.

Creche/Montessori picked up on it, mentioned when she was in final year there (aged 4) in regular developmental meeting, we looked more objectively and said maybe.
Asked GP for referral over that summer, letter sent off.
Started primary school, teacher (about 6 weeks in) laughed off the notion - but by end of junior infants agreed maybe there was something.
Appointment for evaluation came in Sept of senior infants (15 months after referral). Got DX just before Christmas. Had to go private for ed psych evaluation, got that report back mid-March and Principal immediately put in application for resource and agreed to start resource hours regardless as they now agreed with the need.

A range of supports in place in school, some support from Clinic, and lots of things we've paid for over the years - some more helpful than others. And some not necessarily ASD related that really helped when a coach understood her and supported her in regular settings (as opposed to therapeutic settings specifically).

DD is now in 1st year in secondary school and we have seen huge changes over the years, mostly positive.

She was always reticent with strangers, and even people she knew well, taking a long time to come out of her shell in different situations. We noticed that if she met someone in a different situation to normal (say a neighbor in the shopping centre rather than on the street), she would be very reluctant to engage. She would stay back and watch what was going on, and eventually join in - she always needed to watch others to be able to "mirror" their behaviour and learn how to fit in.

Would have difficulties with very loud or very bright places, and it took us a long time to figure out the sensory overload - what seemed minor in most places could be a major reason for meltdown if we were somewhere noisy, bright and crowded. We have learned to recognize the stress of those situations far better, and try to avoid them or reduce exposure to them if possible - and we don't react angrily to her going into meltdown as we have learned that its her stress response, not just "being naughty". And in general, we have tried to reduce the likelihood of meltdowns, and recognize that giving her time and space (darker room, cooler temperature, quiet space, often under a blanket) to allow the overload to diminish really does benefit her. We had a small tent, and loads of fluffy blankets, in the sitting room for years, and she still has a load of fluffy blankets and an ability to create dark dens up in her bedroom if she wants to (and we generally let her at it when she does).

Very high pain threshold - but also didn't seem to know her own strength at times.

Difficulty making and keeping friends. Although that has improved over time.

Diffficulty concentrating on something unless she herself was deeply interested - and sometimes really wanting to get everyone else intensely interested.

Couldn't get herself organized.

Huge difficulties with sleep - and still does. Getting to sleep. Staying asleep. We are constantly working on that one. But we've had umpteen versions of sleeping solutions over the years - on the floor (maybe with a duvet under her, or the duvet making a "tent"), on a beanbag, on the bed in a sleeping bag, buried under 6 fluffy blankets, duvet may be over or under her, no pillows up to a nest of 4 pillows, big fleecy onesies under a duvet and a couple of heavy blankets, or just with a sheet over no PJs, lights on, lights off, blackout blinds, leaving blind open for morning light.... if it means she will sleep, we can accept almost anything that she tries (as long as we can open her door and not trip over her).

Issues around food. We went through beige food phases, nothing but soup (tomato usually, mushroom occasionally acceptable), loads of tuna melts phase, I will only eat pasta, I will not eat any pasta, ....all sorts. So I tend to just work on making sure she gets sufficient food of some sort - even if that means making a totally different meal to DH and I, making sure there are some kind of snacks she will eat available, and adding "hidden calories" when we are in tricky phases (blitzing veggies, adding cream to sauces, giving lots of cheese, for years she had hot or cold milk or hot chocolate (with whipped cream) going to bed just to get the necessary energy into her to get through the night).

She really wants to be creative - but finds it incredibly difficult to be. She is very logical instead, mathsy rather than arty. Loves music but cannot learn it to save her life. Finds it very hard to write anything descriptive in English - but can do something like a newspaper report very easily and do lots of factual research etc.

Over the years, we have slowly improved the need for a rigid routine. She needed to know the plan in advance - when we flew to London for a weekend away, as a surprise, instead of driving to DGranny's house for the weekend, she cried. She had a great time there, but couldn't cope with the change of plan. So we got a lot better at letting her know the plan, and if things changed, letting her know as soon as possible - and also letting her know that we didn't know everything so she couldn't either (that's still a work in progress, but a lot better).

Organising skills are one of our current "projects". We have tended to work on 1 issue at a time - no point in trying to tackle issues around food AND issues around rudeness at the same time as the stress levels increased too high and no progress was made on anything. But tackle one for a few weeks, gently, and get that working better, and you could then move on to tackling something else with some success. Strategies will work for a while (star charts, promised rewards, love bombing....), but need regular change to keep working.

But she is a lovely funny quirky kid. Who is great at lots of sports, has got a few nice friends who understand her, works hard in school, looks after small DCs and vulnerable people really well (if she's not stressed) and is very loving in her own way. (Just ignore the swearing and teenage hormonal grumbling under her breath at times).

WhatOnPlanetEarth · 14/05/2019 11:18

Whatever the baby stuff will be irrelevant - babies are so different and none of that sounds unusual. Again everything you mentioned above is the polar opposite of mine so that’s how different they can be.

You have some reason at her age now to wonder, so, GP, or see the school about speaking to an educational psychologist

Whatevermission · 14/05/2019 11:24

Yay, the baby stuff was mainly just for peony

OP posts:
Whatevermission · 14/05/2019 11:27

Just remembered Aspergirls book and took it off the shelf.

This resonates massively...

Can you tell me about your GIRLS with autism please?
OP posts:
BiddyPop · 14/05/2019 11:30

Also, lots of exercise and "heavy work" are good for keeping the ADHD somewhat at bay. We had a trampoline in the garden for years, a very small one, for DD to just bounce (proprioceptive input - to get slightly technical) and she does a lot of skipping (with a rope) or playing football or throwing a ball in between homework/study sessions. Teachers have often sent her on "jobs" around school that involved carrying heavy boxes down to reception or another room. And Scouts have figured this out to their benefit for packing for camp etc!!

We found that she gets to sleep easier if she has talking in the room - so reading stories went on for years, and now she listens to audiobooks (additionally EXTREMELY helpful for getting through school novels! to at least know the story), or talk radio (podcasts, BBC radio 4 and BBC radio 4extra). It seems to help her brain "switch off" to concentrate on just 1 thing.

BiddyPop · 14/05/2019 11:38

Oh, and getting organized has involved lots of different tactics over the years.

We had a daily "bag list", done for different days of the week, and laminated, so that she would have her schoolbag fully packed, including lunch, and the right gear for that day's afterschool activity (so Mondays included schoolbag, pencil case, homework journal, lunch, water bottle, hockey stick, astro runners, shin guards, gum shield; Tuesday was similar except it was soccer so no hockey stick but everything else (and different shin guards!)...) - because it was laminated, she could tick off each item with a whiteboard marker to check.

Moving to secondary school, we had to think about lockers, moving around school, and we have multiple copies of her timetable laminated and stuck all over (locker, her study table, kitchen fridge, dining room notice board, and her journal), with each subject colour coded and the books in zipped pouches (with any equipment/copies/hardback notebooks etc needed in those pouches) using the same colour code.

She really needs lists like that, and looks for them if its something new or that we haven't done in a while - but she now doesn't need them for a few things that are very regular.

Madwomanuptheroad · 14/05/2019 11:43

Have 3 daughters with ASD dx. All very different from each other. All academically bright with tendency to be very demand avoidant. Eldest has also PDA dx.
Eldest now a young adult. Late dx. From early age issues round peer relationships. Was flagged up in nursery but at that time general thinking was asd mainly affects boys.
Issues escalated after transfer to post primary, did not settle, couple of school moves. Increasingly focused on "mates". Very vulnerable, high risk of exploitation. School refusal. Finally diagnosed but did not accept dx.
At 17 refused to live at home. Convinced LA that high risk to her MH if living at home. Was accommodated in supported living which she left the minute she turned 18. Currently not talking to us / me specifically as I refused to sign as guarantor for a house. So everything is obviously my fault. On the positive side she has been able to access a room in a shared house without guarantor and appears to be able to find jobs and hold them down for a while. So actually quite functional in many ways.
DD 2 starting to be a teenager. Very sensory. Terrible huffs since childhood. Huge anxiety. Dx recently due to long waiting list but we knew and she accepted that she is autistic. Main issue with her is at present the getting more independent safely. She is demand avoidant but I have learned a lot from DD1 so at present she is still in school and working under her own steam.
DD3 very academic, still in ps. Can get very anxious, especially when unstructured activity. Find it hard to make new friends.
Lots of support in place in school so that is working well.
Have to soon make decision re post primary. Dilemma is weather to focus on a academic ability (could get her into an excellent local girls grammar) or go with DD 2 school who offer asd specific support as and when needed.
In my experience asd diagnosis hugely helpful as an explanation. Support offered sporadic and very limited.
The main thing that helps in our case is to allow lots of downtime and reduce demands /expectations.

Whatevermission · 14/05/2019 11:49

demand avoidant

I would like to hear more about this madwomanuptheroad

I can't make DD do ANYTHING. Even the basic, repetitive stuff is a daily struggle...showers, teeth, bed time etc...as a result, I pick my battles very carefully. They are very long exhausting battles. I'm sure it appears that I let DD get away with murder

She is also rude to me and swears, when she is upset

OP posts:
Madwomanuptheroad · 14/05/2019 12:08

The theory behind demand avoidance is that any demand creates anxiety which then escalates. So even if it is something the person would like to do or has no issue with the need to manage the anxiety by resisting the demand is overwhelming.
In the case of DD1 it helped that she moved out and became independent as she has significantly more control over demands made on her.
Before it was any loophole that could be found. The NAS has really good info on it.
As a parent it is very frustrating and painful.

Madwomanuptheroad · 14/05/2019 12:13

What you are doing is strategic demand reduction which most likely gives your daughter the freedom to co operate with some things.
The shouting / swearing is common and will get worse.
We we're advised at the beginning to use behavioural intervention (and managed to get funding for an asd specific certified behaviour therapist). It was in hindsight the worst thing ever. It escalated the situation in terms of violence and let to a total breakdown in relationship.
I now know that behaviourist interventions are likely to escalate the anxiety and the extreme avoidant behaviour/ aggression.

Whatevermission · 14/05/2019 12:17

The shouting / swearing is common and will get worse

🤣🤣🤣

I don't know why that made me laugh. Just, so honest.

Can't wait, looking forward to it! 😫

OP posts:
Whatevermission · 14/05/2019 12:19

You made me remember...when I attended a 'talking therapy's session with DD. I can't remember what was being discussed, but DD smacked me round the chops

She also nearly knocked me out with her scooter once. And kicked out the car windscreen

OP posts:
Madwomanuptheroad · 14/05/2019 12:30

If it is PDA she is likely to come accross as the worst behaved manipulative little madam and you will appear as a terrible and ineffective parent.
There is the added problem that there still is limited understanding by professional s and that training lags behind.
With my daughter I got a deja Vu sense during the channel 4 documentary a few years ago about the linfield Grange school - an asd specific residential school. One of the kids featured could have been my daughters twin!.
I contacted them and even though we were well outside catchment area and age range they provided good advice.
The only thing I can advise is to push like mad for dx, try to get advice from nas.
Push for support in school and try to have everything documented.

Madwomanuptheroad · 14/05/2019 12:37

You are doing the right thing by choosing your battles / trying to keep anxiety down.

Cecily75 · 14/05/2019 12:51

DD is 16 and just starting the CAMHS process.

We're not really sure what her issues are because she refuses to talk to us parents, but one symptom is reduction of food. She had seen a counsellor in school and that alerted us to her food refusal issue.

CAMHS had suggested an autism diagnosis, which she agrees with - she says that explains a lot for her.

She's very academic, not great at making friends, no eye contact with strangers (or even family friends), extremely introverted and has masked for a long time I suspect. I'm guessing that her anxiety has increased throughout the teen years, but what do I know?!

We're finding it horrible to see her unhappy and restricting her own food intake Sad

I will look for that Aspie girl book (can I ask for the name of it pls?) and take a look at the FB group. Thanks for starting the thread OP.

Star790 · 14/05/2019 13:33

Haven't read the whole thread yet but I was going to post a similar one! My daughter is also 8
and we're looking into assessments for ASD and ADHD, found out it's an 18 month wait with local NHS so we're researching private clinics at the moment (will be using our savings). Will read the full thread x

newnameold · 14/05/2019 13:46

star

We went private for DD because things were taking so long. We stayed with the NHS too though. Private clinic did not diagnose her. We got told she was almost there but not quite and they wanted thousands to come and observe her in school. I declined this and waited it out, 6 months later the NHS diagnosed her, without going into school. DD was 6 when we first started the process and 9 at diagnosis.

Clinic was a good hour and a half from our home so travel etc put the cost up, but we paid £2k for the assessment; including ADOS but they didn't see through her masking.

One thing CAMHS did tell us was that the ADOS isn't a good diagnostic tool for girls, because of the masking aspect.

KaliforniaDreamz · 14/05/2019 13:51

Honestly though, I wouldn't change her for the absolute world. She is adorable. Someone once told me she's the human version of Dory
the loveliest thing i've read on the internet today x

Madwomanuptheroad · 14/05/2019 13:56

Camhs are correct that ados is not particularly good for girls - unfortunately it is the most widely used. The Diagnostic Interview for Social and Communication Disorders (DISCO) appears to be more suitable for most girls as more multilayered. However in many areas to get recognised by NHS /CAMHS you also need to have ados assessment.
In addition for private diagnostic assessments both prices and quality can vary widely.
I would strongly recommend to look for an assessment centre that is connected to/ recommended by NAS and/or Lorna Wing ctre. and look at post diagnostic support offered.
ASD is a very lucrative business these days ..