What made you suspect aspergers/autism?

[FateLovesTheFearless]

My 7 year old dd is awaiting a referral to be assessed for aspergers/autism. I don't know any other parents with a child that has ASD/aspergers and just wondered if anyone would mind sharing?

I also wondered how long the referral/assessment takes roughly, what the assessment involves and how getting a diagnosis helped? I am pretty clueless.

Thanks tirednesskills for sharing.

I thought something wasn't quite right with dd from around the age of two too. The very first thing I noticed was her obsessions. She would fixate on something and just want to do that same thing over and over again. She started walking on her tiptoes which was the first time I went to the gp. She didn't just walk on them, she would stand on tip toe whilst stood still watching tv say. She loves routine again almost to the point of obsession. I remember once giving her pizza for lunch. She wouldn't accept it was lunch because it wasn't sandwiches and remained upset for the rest of the day because she hadn't had lunch.

As she has gotten older, various other things have appeared. She went through a stage of hating shoes because they didn't feel right. She started having sleeping issues and to this day will go to bed around eight but won't settle until midnightish. She obsessively goes to toilet when i say it's bed time, even if she has been five minutes before and will remain anxious until she has done so. She is hugely fussy with food, has a very bland palate, gags on certain textures of food like eggs, mushrooms, melted cheese, mince. She will eat certain foods but won't eat them if combined with other foods such as a baked potato, she will never have one with anything but butter, despite liking a lot of the usual fillings.

Socially wise people comment how she is so happy to spend time by herself. Her friends will come over but she will not play with them most of the time, she will take herself off and do something on her own. She never ever says sorry, without being prompted, it's like she doesn't understand when it should be said. She doesn't like to make eye contact and doesn't like to be touched unless she instigates it herself or by people she knows very well. She has very little concept of danger and risks.

There is such a lot, it would make for a long long post. I was hoping that a diagnosis would make her feel better in herself as the older she is getting, the more self conscious she seems to be getting and anxious. I was also hoping a diagnosis would help me understand how to support her more as sometimes I just feel clueless.

I found out two days ago she is being bullied at her school. I will be dealing with it when term starts again but am considering a move of school anyways for various reasons but I would have liked a diagnosis before I did so, so if there is something there such as aspergers/ autism like the doctor seemed to suspect, then I can make sure the new school is adequate in support etc.

Ds1 was 2 when we first saw GP about it but even as a baby I felt that I'd bonded with him but he hadn't bonded with me (or anyone.) people were just furniture to him, in his way or not - if the former he would just physically move you, like a chair! By 2 I had attained a certain patronising fondness from him, like I was a smelly old family dog. By 4 he was far more cuddly and affectionate.

Dd1 was different from day 1, would never settle, hated being touched, hated the pushchair, hated moses basket, hated being changed and hated people picking her up, as she got older it became more obvious, at 8 months she said her first word (which was 'triangle) and she hasn't shut up sinse, she had phobias, was sensitive to sound, would gag on food and never slept. we finaly got a dx when she was 4.

Dd2 was a chilled out baby, showed no signs of having ASD until she was almost 2, she was non-verbal, lost eye contact, would line up toys and loved routine, she would not play with toys and was obsessed with magnetic letters and the alphabet. She was diagnosed with ASD just before her 3rd birthday.

Waiting for our first referral - he's just different. Doesn't 'get' a lot of social stuff. School have always said he'd grow out of it and become emotionally mature but no sign of that so far. He's intelligent, top set everything so school aren't interested it's been less of an issue.

I remember when DD was a baby I felt it in my gut that something wasn't quite right, even though she was smiling, pointing, walking etc at a normal age. She'd reached "all" the milestones as far as family, friends and "professionals" were concerned. When she was about 18 months old, she would run everywhere uncontrolably. I would describe her as the Tazmanian Devil at this stage. She wouldn't play appropriately. She would just be like a whirlwind, usually leaving behind a trail of destruction. The tantrums started around 2(typical age) but they were anything but typical. Very physical! I would get hit, thumped, scratched, bitten on a daily basis to the point where I felt like I couldn't cope anymore. I was actually starting to become scared of her and taking her out was an utter nightmare. I had to stop taking her to parks etc because she would have no clue on how to socialise and would just run in front of swings and then run out in front of the road. I would accept that i would get a beating when I had to bring her home. We NEVER just walked/drove home easily. It was always just horrible.

She was doing the lining up her toys, dvds etc and would get very upset if I moved one. However, I used to do this deliberately to test her and now she's much better with that.

Her speech now(she's5) is odd. I can have a conversation with her, but it's limited and when she talks to other dc's, it's really very unusual. She tends to go into school skipping, which is lovely, but will say things like "oh boy oh boy!!!My friends are here!!!WooHoo!!" Unfortunately, she still hasn't really made any friends, but she doesn't understand this. She doesn't get the dynamics of friendships.

The list goes on and on really. Having said all that though, she has lots of positives and she always makes people smile. She's kind, thoughtful, creative, bright and she HATES injustice

Oh and she can't ride a bike or use a scooter.

Thanks for sharing. It's amazing to see how varying the 'symptoms' can be and the timescales for a dx.

DS1 was just different. I asked the MW before we were discharged if she thought there was something going on!

He was so passive. At 10 months he had an accident and broke his leg, in traction for a month - not a murmur of complaint, even with bedsores.

His speech was late and unintelligible, he was very upset by loud noises and bright light, he is very clumsy, hyper mobile, poor tone

He could do 100 piece puzzles at 2, and at that age would concentrate on one thing for hours and hours.

Doctor Who obsession started at 2. He was tested then and DX'd with sensory processing disorder, but not ASD.

He never pointed, and there is an odd thing about him- he doesn't impact in a space, you can honestly not know he's there!

ASD DX at 4, at which point there were unbelievable sleep and behaviour issues, which are settled now. Toilet trained at 5, not reliable yet.

His IQ, tested at 4, put him as top 2%. He was essentially pre-verbal at that stage.

Final DX of HFA, with assiocuated Auditory Processing Disorder.

He's coping in mainstream without support. At 2 he was earmarked for special school. Very proud of him!

I suspected something was going on with Dd3 from really young, she would not take a bottle from anyone but me. Gagged and vomitted anything but milk, including medication.

Screamed hysterically if I vacuumed even if she was at the end of the garden in the pram.

Scary moment when she was about 6 months and she sat in the pushchair echoing the computerised voice that says "Cashier number one please" in shops, not the words but the musical tone and pattern of the voice.

She was just our lovely quirky LO until she had to go to school and then all hell broke loose. She just couldnt bare[sp] it, it was a nightmare.

We started the assessment process when she was 5.5 and she was finally DX'ed with ASD on her 9th birthday.

We moved her to a lovely school last year and since then she has begun to thrive again and we see a lot more of our lovely quirky little girl again.

She struggles with noises, routines, sensory stuff, rules which she sets herself, friendships, social skills, new situations, coordination. There are other things but I cant think at the moment.

Girls can present very differently to boys with ASD, be aware that some proffs are not used to seeing girls and can get confused by girls being better at masking their issues and being quite good at fitting in at school. The downside to this is that they are exhausted when they get home and constantly struggling to fit in every day can affect their mental health, confidence and self esteem.

Good luck

With DS1 (now 10 with AS) it was first suggested when he was about 4 by my friend, she read "A curious incident of the dog in the nighttime" and said that DS1 spoke exactly the same as the boy in the story.
I put it out of my head, as apart from DS having very intense obsessions - 18months he knew the digestive system inside out (all enzymes etc), wouldn't eat anything without knowing what use it was to his body, then from 2 onwards tudor and roman history, DS and I were perfectly happy. But my sister, who is a SALT, said all men have autistic traits and DS1 is fine.

Then DS started school. How things changed! Suddenly he had to fit in with other people - e.g. it hadn't mattered before that it took us a couple of hours to walk a 10min walk to the shop as he investigated every stone and stick. Now he had to abide by school rules. He spent the first year or so at school hidden under a table, if they pulled him out he tantrummed baddly. He tantrummed going into school. He tantrummed coming out of school - could take an hour to get from school gate across the yard to the car... Transitions were definitely not his thing!

So when HV came to see DS2 (born in October after DS1 started school) I told her in tears all about DS1. She said, "sounds like AS, I'll refer to community paed". Suddenly I realised all the symptoms of AS that DS1 actually had - he would talk to people with his back facing them, no eye contact, massively stuck to routines, couldn't cope with new things, e.g. if we said "let's go to McDonalds for lunch" he had to know which MDs, which table, which food etc before we could get him near the car. Couldn't cope with choices. Sensitive hearing. Would only wear certain colours and textures.

Comm paed referred to CAMHS, after 3rd session with social practioner there she decided we needed to see Psychiatrist for AS dx, but comm paed decided to overrule her and say was School anxiety leading to AS traits.

Removed DS from school and home-edded him. Moved areas, put him back in school - where he was happy. Still very anxious. Referred by GP to anxiety team. They said 1st appointment - this is AS, referred us to ASD team. 4month waiting list. Had dx within couple of months of seeing them.

DS2 has classic ASD symptoms - no language til nearly 3, no pointing, no eye contact, tantrums at the slightest change etc etc. When DS1 was seen by ASD team they said they would put DS2 on the school referal list as a high priority case(they were sure he had ASD) as the pre-school list was so long, so he wouldn't be seen by them before he started school in 6 months time. The school team waiting list was meant to be 4months long. Well DS2 has now finished reception and still not got to top of the list 18months later. So I treat him as if he has HFA and we get along ok. So our waiting list has suddenly massively increased, they are doing 'staff restructuring' ie laying off staff involved in the dx procedure :(. Last time I checked they still didn't know when he would be seen. However, as I know that having a dx won't make much difference at the moment, I'm happy to wait. DS2 unlike DS1 is getting on exceptionally well at school, he may not have friends but he is loving the work. The only difference a dx will make is he could get a prescription for melatonin and I could desparately do with some sleep!

Dd1 was always different but of course our first so clearly I knew nothing
She would scream and scream and I couldn't leave her with anyone. She was always sick, very routine lead, food was a issue and bowel issues were huge. She sat late, never crawled and didn't walk till after her second birthday. Nursery approached me about her lack of friends and need to do things over and over again but dismissed it as first child with high IQ. Got to school and hell on earth broke out. She freaked out if she didn't know what was going on, hated the noise and so many children. She was given working dx at 6 and full dx of autism at 7.
Dd2 rarely cried, was an angel child who would go to anyone. She got to 18 months and lost language. She tip toed and hand flapped, clapped all the time, spun in circles and never sat still. She screamed all the time, didn't make eye contact and became violent. Her play was the same over and over and her language became echos and growls. She was seen and given working dx of autism at 2years and fully dx at 3years.

Dd has only just been diagnosed at 15 with aspergers.
Main reasons, obsessive interests, lack of social ability/understanding/very anxious/literal etc.
she has many personality disorder and demand avoidance traits too however, I will be discussing this with her psychiatrist soon.

DS was diagnosed at 2.

He had no speech at the time (had lost many of his words at around 19 months). Didnt play, no pointing, no eye contact, hated new places, going out was an absolute nightmare, very ritualistic - constant head banging etc.

Because he was so different he was dxed quite quickly. (saw Paed 2 months after initial HV referral). Then SALT within another 2 months.

What does SALT mean?

Speech And Language Therapy.

Thank you. My dd was always ahead of the game really. She walked at nine months, said her first word at a year which was hello. By two she was using words like delicious. It's only really been since school that she has gone from being ahead to behind. She excels in maths, everything else is below average for her age.

The only thing with her speaking is her twang. People tend to comment that she sounds posh and a bit American. She was born in England and lived in Scotland from the age of two.

Leonie thank you. I wasn't meaning to suggest my dd can't have any sn because of her early development. I am just amazed at the difference between each child with ASD/ aspergers. No wonder it can be such a time to have a dx.

The gp said he found the fact that she was so ahead at maths interesting. Any ideas why? I didn't ask at the time, wish I had now.

Alot of children with AS and HFA are very good at math (both my dd's are maths genius's). TBH most gps know nothing about ASD (just the basic red flags) they are not qualified to make a dx (this is what specialests are for), this is why some times its hard to get referral as gps are only looking for the more obvious signs.

I wondered if that might be it.

Can I ask, are children with ASD/aspergers often anxious? My dd has self esteem issues and can get very easily upset, complete with hand flapping. She still has things in or touching her mouth constantly, be it hair, clothes or rubbing a toy over her mouth.