Can you tell me about your GIRLS with autism please?

[Whatevermission]

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

Two girls with autism and adhd here. A couple of your issues are similar to ours. All girls with autism are different though. Benefit of a diagnosis was an understanding of self. I’ve recently been diagnosed with adhd in my early 40s and had I gained the diagnosis earlier I might not have had many mental health issues because I couldn’t work out why I felt the way I did. Good family, no disruptive home life. But I felt broken.

My girls are both different as they fall I suppose on different ends of the spectrum.

Dd 8: quick temper, friendly, hates noise, struggles with transitions, fidgets a lot, many sensory issues around clothes, hair and teeth brushing, sleep issues.

Dd6: Severe language disorder, climbs a lot, no sense of danger, moves constantly, poor sleep, sensory issues with hair and teeth, likes routine.

The control is probably part of her anxiety as she’ll feel safer being in control of things.

My 6 year old daughter is being assessed for autism/Asperger's/who knows what. These are the reasons:

• Every emotion is an extreme, whatever it is from sadness, excitement, anger... It's like she can't control/filter.
• Nervousness in new experiences/places/people generally come across as mad excitement which she cannot control.
• Constant fidgeting, cannot sit still for long at all.
• Difficulties with eye contact, but not always.
• Obsessive nature with media, animals.. whatever her interest is at the time it is all consuming.
• Doesn't listen well or follow instructions at home, however at school she is fine but this could be her masking which girls are apparently very good at.
• Very academic in terms of reading and writing beyond her age, however this comes naturally with no effort (as she won't make any!)
• Comes out of school manic (after being fine at school).
• Inappropriate comments (others appearance for example), dispite being told repeatedly.
• Plays happily with others on her terms but would rather be alone than compromise "her" rules.
• Sensory issues around sound (have had hearing test and is fine.
• Picky eating, only like bland and cold food.

School say there is nothing at school that indicates autism, however at home it is a different matter which I believe is because she is masking her symptoms at school and using learned behaviour. For example, a child fell over, my daughter ignored her but other children helped. The next time a child fell over she did help but parroted things the children and said and done the time before.

I forgot... extreme anxiety/school refusal

Get the diagnosis - she may/may not appear too different at 8 but this will change as she gets older and her peers start doing things independently which she can't, behaviour may deteriorate causing issues in school. A diagnosis may help in terms of being able to implement different strategies in future

And in common with both of you...sleep issues. As in, won't go to sleep!

How do you get an assessment if there are no issues at school?

Mine struggle to shut their brain off. Moshi sleep stories are good and wind down before bed but the 8 year old wont sleep until 9.30 and the youngest 8.30. A diagnosis will also help school give her the appropriate school.

Take lots of notes to the GP and ask for a referral. Also check out the dsm 5 criteria for an autism diagnosis.

DD 11: introverted autism. Has major 'shut downs' rather than meltdowns. She'll basically turn into a rag doll (irrelevant of where we are including crossing the road etc). Won't move, walk, talk, react. Basically completely closes down. Often curls into a ball.

Major sensory issues. Can't wear tights, jeans, tight waist, belts.....endless list! Basically lives in joggers. School uniform is a utter nightmare.

Can't stand loud noises, crowds, bright lights, change of plans.

Awful social skills. Can't hold a conversation, can't make eye contact. Poor language skills, very disjointed, mumbling, talking too fast.

Low academic skill. Poor understanding. Very behind in school and struggles.

No sense of danger at all! Will walk straight into the road. She needs to be within my reach at all times when near roads/car park etc.

Few other stuff. Turbulent friendships over the years. Very naieve and incredibly easily led.

Having a diagnosis was a godsend to us. I knew 'something' wasn't right from a very, very early age. Having a team of professionals tell me they agree and diagnosed her gave us all closure. We're much happier as a family now!

I find autism in girls tends to transform and manifest in different ways are they grow. DD used to have horrendously violent and aggressive meltdowns that could last up to an hour. They've long stopped now (by age 6 or so) and now it manifests in a very introverted manner.

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

Also, sleeps like a log. 10 hours of solid, deep, comatosed sleep. She could fall out of the top bunk bed and I bet she'd keep sleeping! Downside she's only (very) recently come out of night time pull-ups. Medication sorted it.

Also, horrendous anxiety.

My DD age 5 is on the waiting list to be assessed for ASD. She also has mild global development delay. She will have the odd screaming fit, gets upset easily and then escalates. Struggles with her school work and also at concentration and paying attention.
She plays with children as a group, mainly the boys. She hasn't really formed a close friendship with another child, like her teacher told me most girls her age do.
Also sensory and sleep issues which seemed to have eased a little.

20 year old dd with autism here. Diagnosed at 2. Diagnosis didn't exactly access services but did get us fast tracked through camhs when she had a mh crisis as there's an autism specialist here.

At university now who have been brilliant

I have two DDs with AS and this is a familiar list.

Still tantrums like a 2 year old
May be meltdowns, rather than tantrums. Can be triggered by being told no but the root cause is changes to routine, sensory overload, exhaustion from social interaction or anxiety. It's a loss of control due to an inability to understand and manage your own emotions.

Cannot compromise, has to be her way or see above
Can be linked to poor theory of mind; an inability to understand that other people may not know something you know, feel the way you do or need what you need.

Has few friends
Common in girls with ASD. Could be because friendships are hard work and not worth the bother or just that her social skills are so far behind her peers she is being excluded.

Very bossy/controlling
The need to be in control is usually either about trying to make the world predictable to manage anxiety or poor theory of mind (see above)

Lots of sensory issues earlier in life though; mostly ok
These can come and go, strategies can be used to manage them and avoid unwelcome stimuli and they can also change with anxiety levels.

Likes tidy ordered room
My DDs are opposites with regard to this.

Doesn't sit still/always banging stuff/fidgeting/clumsy
Could be linked to poor proprioception. Look for the Brain Highways videos on Youtube. There's a really good one on proprioception.

Doesn't listen/asks questions but doesn't wait for answer
Not sure about this. Is it repetitive?

Very academic
My DDs are both very academic and it's been a nightmare finding school provision that will teach them to an appropriate academic level when they can't/couldn't cope in mainstream.

Extreme anxiety/school refusal
Very common. Make sure she knows you're on her team. This is about being unable to go, rather than not wanting to go. Don't punish non-attendance and make sure she has activities to do that support her well-being and self esteem. Apply for an EHC Needs assessment so you can get provision she can cope with.

I only got diagnosed a few months ago. I'n in my early 50s. An early diagnosis would have saved a lifetime of not understanding why I had to learn things by copying which everyone else just seemed to judt know instinctively and would have helped in the countless times when I've been stressed out without understanding why.

Like the OP's dd I was no trouble at school: bright, keen to follow rules, conforming. During my assessment I was told that's very common for girls on the spectrum.

Thank you all, for sharing with me and for the suggestions gold.

What is an EHC needs assessment?

Suggestions of what to do with her would be hugely appreciated. For months on end, it's a hard job to even get her to leave the house. She has joined many clubs, been enthusiastic, then refused to go.

She currently does 2 sports based activities a week. But, in the house, she just wants to watch TV. She won't 'come for a walk' or anything which isn't specifically something she is going to, IYSWIM. I've tried really hard at this, but she makes an outing so unpleasant that I don't any more. We have a trampoline at home which she likes. She likes slime. And that is literally IT. She would watch TV all day everyday if she could (and sometimes she does)

My 11yo is seeing a counsellor at school for her extreme anxiety. Counsellor had a chat with me last week and suggested that DD1 could be on the spectrum and to follow it up. I had wondered recently because I've been looking for info for myself and DD1 was ticking boxes too.

SistersKeeper12 your post describing your dd’s behaviour is as if you’ve just spent a day with my 4yo and Dd and described her perfectly.
I’ve toyed with the idea that she might be somewhere on the spectrum for a long time, but have always talked myself out of pursuing it with the HV/doctor etc.
What you’ve described is exactly her. I’ve brought up her behaviojr at home with preschool a few times and they are always really surprised to hear it, because from what they tell me, she’s the golden child at preschool! She can follow instructions first time, listens well, can sit on the carpet and pay attention at story time etc, but as soon as she sets foot outside preschool, all the behaviojr you describe begins.

Obviously it varies for each child. But my dd(10)

1. Loves routine, can become distressed if plans change etc

1. Happily plays alone at school, although she does have friends she enjoys her own company.

1. Can be very emotional, goes from 0 -10 for minor things such as being told off.

1. Very bright, fantastic at maths and reading.

1. Struggles with why? Questions and the concept of why things happen.

1. Very girly, loves, pink unicorn ext.

1. Loves animals.

1. Struggled with personal care (was in nappies til 4, wasn't bothered about being wet/dirty.

1. Struggles with noises especially bees/flies. Covers her ears and screams if they're nearby.

10. As a toddler used to flap her hands and get excited.

These of course could be present in a non autistic child also.

Took 7 years to get her diagnosed.

DD is 10 and was diagnosed last month, after 2 years. She dislikes changes in routine, spoke v early, struggles with friendship because she struggles to read people , is v academic. Sleep is pretty rubbish and used to often go to sleep after 10pm but started taking melatonin about a year ago, which has transformed our lives. Totally disorganised and quite naive. V confident speaking to adults but not that keen on school. Doesn't cope well with teasing and often overreacts (yy to PP who talked about emotions being all or nothing). Often needs me to dress her because she sometimes is just impossible to get her moving. Is currently in a mood with me because I got irritated after asking her about 10 times to get out of the bath.

Oh, I meant to say I pursued a diagnosis because I wanted to have the means to point to that should she need more support when she hits puberty or goes into Y7, as I hear that girls with ASD can really struggle at that point.

thegirlwiththecurlyhair.co.uk/

Check out the girl with the curly hair which is primarily but not exclusively a support organisation for females on the autism spectrum.

There's also a closed fb group called Colouring Outside the lines, for parents of daughters on the spectrum.

An EHC Needs assessment is what you ask for if your child has additional needs and may need and EHC Plan. EHC Plans used to be called Statements of SEN. Basically, professionals observe and assess your child and report off their need sand how they should be met in school. If a threshold is met, an EHC Plan is issued and you get to name the nearest school that can meet your child's needs. The IPSEA website has lots of information and resources that will be helpful. I'm happy to explain more by PM if that helps.

Diagnosis has been positive for both my DDs. I know numerous parents of children with an ASD diagnosis and not one has ever suggested that they regret the diagnosis. It can make it easier to get support in school and help you and the child understand what support they need and why. My DD1 was diagnosed aged 12 and said it was good to feel that she was part of a group with a similar profile, not just a weirdo on her own.

In terms of activities, I would just focus on building a safe, predictable routine with lots of opportunities for down time and quiet. If there's a party to go to, give her low arousal activities for the rest of the day. Remember that things she enjoys can still be overwhelming, hard work and anxiety inducing.

Make sure changes are planned well in advance and you keep letting her know about them. Have 'now and next' type conversations with her lots.

Don't tell her off for wriggling and fidgeting. Get fidget toys she likes to help stop any destructive habits like chewing cuffs or picking skin.

See if weighted objects help her to feel calm if deep pressure helps. If she's tactile defensive, avoid touches that make her stressed like tickles and things brushing against her.

Communicate clearly and in short sentences, especially when she's feeling anxious. Find out about impaired executive function if she struggles with complicated tasks like getting dressed. Break tasks down and, if you have to repeat an instruction, use exactly the same words again.

Treat meltdowns as distress, not bad behaviour. Don't punish them but it's fine to ask her to help tidy up and mess she's made or make good any damage. Don't do this until several hours later. She needs to know that her actions have consequences so she has a reason to learn to manage her emotions a different way as soon and she is able to.

Reading with interest!

Have been trying to get my dd (11) diagnosed for 3 years. The paediatrician said because she makes eye contact and has friends, she hasn't got asd.

Any advice on pushing for a better doctor and getting a diagnosis and, most importantly, help with anxiety?

If you all don’t mind me asking- at what age did you start to think your girls may have autism or ADHD?

My daughter is only a baby, 10 months old. But she just won’t stop moving, can’t stay still and seems to have some sensory issues. Although she is meeting milestones well and will smile/ wave a lot. Other babies her age seem far more content. I know it sounds silly as she is so young but I just think she is different? Not a bad thing of course but I think it may be useful to know what to expect.