Aspergers?

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oldbanger

Original Poster:

4,316 posts

237 months

Wednesday 19th August 2015
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I am kinship carer to two nieces following the death of their mum. The younger one we adopted when she was a toddler, now 8, the older one has just come to us aged 11. Her grandparents have had her for a decade but couldn't manage as grandad has just lost a leg and had a stroke.

The older one suffers from trichotillomania (hair pulling) so I have arranged CBT. It's going to take her a while to settle in, but she is bright and articulate, if fairly anxious and socially awkward. I can see the way forward.

Unfortunately I can't say the same for my adopted daughter. I have begun to suspect aspergers over the last few months, and since the arrival of her sister things have just got rapidly worse. I already have a GP appointment booked but wondered if other parents could offer any advice. A couple of members of the wider family are on the spectrum, and in my daughter's case, the signs are;

Lack of depth of social interaction with other children, plays alongside rather than with them, and tries to control them, struggles to make friends, finds it difficult to compromise or empathise so spends a lot of time huffing rather than interacting
Little interest in imaginative play and toys/dolls, but will play board games, computer games, obsessively watch TV shows over again, plays sports, balls, bikes
Meltdowns/1h plus tantrums, particularly at transitions like bedtime and leaving places, or if sudden changes are made, or obsessions/demands are thwarted (e.g. If losing a game). Time outs etc are useless, as are cuddles.
Lack of eye contact, particularly when angry
Sensitive about clothing, no buttons, hard elastic, denim etc.
Imitation of TV characters and dominant people in her life. Will unconsciously repeat behaviours and sayings, right down to inflection and intonation, especially a problem as she has become obsessed with Tracey Beaker and granddad has started swearing uncontrollably since his stroke
Obsessional, particularly about people. Will latch onto one person and try to control them.
Very literal in interpretation, which may lead to misunderstandings, accuses people of lying to her
Destroys items in strange ways. Went through a phase of cutting holes in her leggings, another of pulling hand off clocks (still dislikes clocks and won't have one in her room)
Doesn't understand personal boundaries, will repeatedly take personal items from drawers and bags, including sometimes money, even when told not to
Hates to be "taught" which delays learning

She has always had a temper. Even as a baby she would become enraged at people laughing. She struggled with tantrums when she started school and in year 3 was still becoming tearful on a daily basis. I had thought she would grow out of it, but she is getting worse. Meltdowns are pretty much daily.

She can be utterly lovely in a 1 to 1 situation especially if getting her own way. I just wish I knew how to help her the rest do the time. She must be thoroughly miserable, as am I.

Defcon5

6,160 posts

190 months

Wednesday 19th August 2015
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Can't offer any advice, but you have my utmost respect.

oldbanger

Original Poster:

4,316 posts

237 months

Wednesday 19th August 2015
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Thanks Tom

AMLK

407 posts

184 months

Thursday 20th August 2015
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Can't offer too much advice at the moment, but completely understand your situation. I considered posting something similar a little while ago.

Our daughter is 10 nearly 11, started her final year in primary school yesterday. I am terrified of her going to high school because of her 'quirkiness'. Her main problems areas are social (very much like you described), hypersensitivity (textures of clothing and food, abhors having her hair brushed - not helpful when she has blond afro type hair!) and she is unable to sleep unless she has music, radio, audio book or combination of them playing. She does have meltdowns, but we are beginning to learn the triggers and control them better now, but it is still very hard at times. Despite this she is a very intelligent, kind generous and loving child.

I had several meeting with her teacher, head mistress and learning support teacher last school year after they approached me with concerns. From these meetings and individual meetings with my daughter they strongly suspect she has Aspergers. At the end of last term the head put in a hospital referral for her to go through official testing, which we should hear from shortly.

The part I dreaded the most was telling our daughter, but this turned out to be the easiest bit!!! She actually said she was pleased! She said she always new she was different to her friends and this would explain things. I did say that this is NOT an excuse for bad behaviour. She was concerned about what the hospital appointment would entail (she is petrified of needles), but is said it would be meetings like she had with her teacher discussing her likes and dislikes, feelings and relationships/friendships so she was fine with that.

My cousin's 11 yr old son has been diagnosed with Autism Spectrum Disorder as well as sensory perception disorder. We also found out the other week that our 5 yr old nephew was diagnosed with ASD last year. We also have other mental health issues within the wider families.

Have you discussed you concerns with the school? They maybe able to help your daughter at school.I hope you get things sorted, I know how tough things can be.

I wish I could help you more, but I will let you know how things go for us.

Feel free to ask me anything.

oldbanger

Original Poster:

4,316 posts

237 months

Thursday 20th August 2015
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Thanks for sharing. I had forgotten about hair brushing/washing. Tangle tamers are your friend.

My daughter's school have highlighted her behaviour on a number of occasions e.g. Getting overwrought and latching into other children, but Aspergers hasn't been considered.

I have another niece with sensory processing disorder and a cousin who very clearly has aspergers but isn't diagnosed (very geeky, only eats a small range of food items, very literal in manner with no conversation).

I am seeing the doc at the end of next week, so we'll see what happens.

mad4amanda

2,410 posts

163 months

Thursday 20th August 2015
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Hi

Total and utter respect for you and your family. I have worked with young people with Special Educational Needs for 20 years, specialising in Autism and behavioural issues and my advice would be for you to either get your GP to refer to CAMHS (Child and Adolescent Mental Health Services) or a paediatrician or parents can self refer to CAMHS. Dependent on where you live there will also be help groups and you can always contact the National Autistic Society for more information, help and guidance....different counties can vary as to the support available.

Let me try to start at the beginning....I have seen all of these behaviours before and they can manifest for a number of reasons (I do not know your child personally so can only give suggestions for strategies that you might like to try at home and school). Talking about school, what support does she receive? Both inside the classroom and at unstructured times? How is her language development? Do you or the school use a visual timetable? Is she prepared for changes well in advance? Sensitivity to certain fabrics against the skin is common....sorry but it will just be a case of finding something she is comfortable in and arranging with her school if it effects her uniform.

AN EHCP (Education Health and Care Plan) is in place of the old style Statement of Educational Needs. For a child to be assessed an application for assessment would come from either you, as the parent or the school (as they may have concerns about being able to meet her needs) - the applications are sent to the Local Authority SEN department. An EP (Educational Psychologist) would complete an assessment, as would other professionals and these would be submitted to the Local Authority for Statementing consideration. If it was agreed that she requires an EHCP, it could then be issued and then you could have access to a special school, if you wish. Have the school had any discussions with you? Do they have any concerns about her education? There are other ways of accessing outside help in school too, they could discuss your daughter at a meeting called an In-School Review, where numerous children are discussed for a number of issues (each individual to each child). From this meeting the school could seek the advice and guidance of an Educational Psychologist, who would be able to guide and advise the school and you. This intervention would help support the application for the EHCP. An EHCP would either give her current school access to more funding to help support your daughter, or the option to move her to a more specialist school.

Your daughter seems to be noise sensitive. That could be a certain pitch, noise or repetitive sound (ticking clock) - (can your daughter tell the time? Or have school recently been working on time? I know this might sound strange but if it is something she cannot come to grips with, she will not want to face it).

Those around her, both family and within other environments (such as school), might benefit from reducing their language. Try not to give her too many keywords or instructions in one go. This also reduces the opportunity for her to misinterpret what is being asked of her. The adults around her need to be aware not to use ambiguous, sarcastic or use too much language which could be literally misinterpreted. Your daughter may benefit from a visual timetable both at home and school. This will limit her choice times and she will be very clear of what is expected. Morning and bedtime routines can be learned quite quickly. Remember you may need to reward her at first. This doesn't have to be massive - it could be something very small or she could save up points towards something bigger.

The fascination with watching the same thing over and over again is common too. It is obviously something she enjoys and this may be how she unwinds. What you need to find is a happy medium that works for both you and her - she gets her outlet but not to the extent to feed an obsession. Talking about obsessions you also mentioned that she becomes attached to people and tries to control them. Are these adults or other children? Again these behaviours can manifest themselves for a number of reasons, this is something that the EP or CAMHS could address. Getting her used to as many people as possible is another way of sometimes being able to lessen this trait.

Those around her can help her more by ensuring that they are consistent and that everyone is saying the same thing to her. Frank discussions between home and school are essential for you all to support your little girl as best you can. I am sorry that this has turned into more of an essay and I am going to have to stop myself here, otherwise I will still be typing next month and also I do not want to scare you in any way.

Please contact me again if you have any questions...it does not matter how small or insignificant it may seem - these are often the ones that count the most. If you would prefer to discuss more privately please PM me.

YOU ARE NOT ALONE!

Amanda

oldbanger

Original Poster:

4,316 posts

237 months

Friday 21st August 2015
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Thanks Amanda. I think the clocks issue relates to the movement of the hands somehow worrying her when she is trying to sleep.

Clothes wise she can cope with the school uniform because it's the rules to wear it, as long as we don't make her wear long sleeves and she gets the zip option where available.

Her classroom has seemed quite chaotic this year. My daughter is just scraping through academically at the lower end of normal for her age. She is on the bottom table so gets some extra support.

I work full time as main earner so we are very reliant on after school childcare. Not ideal but I have no alternative at the moment.

leedogg3

323 posts

166 months

Friday 21st August 2015
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Hi All,

Just to say our eldest was diagnosed last year. He has had a full year at secondary. And he's doing okay, better than we hoped! :-) it's really hard at times and intoxicatingly brilliant at others!

Cheers

Dr Interceptor

7,743 posts

195 months

Saturday 22nd August 2015
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I can't offer any advice, not being a parent, but I do employ a young lad (23) who has aspergers.

He's a delight to have around, and he's taught me to be much clearer when I give instructions to members of staff, as he can't 'interpret' like other members of staff can. He's 100% honest as it's absolutely impossible for him to tell a lie, and unlike other young people his age, if he makes a mistake, rather than cover it up, he'll tell you and correct it, and you can pretty much guarantee he won't make the same mistake twice.

As I said, he's a delight to have around, and I have utmost respect for you on your journey with your young'un.

Jon

5MUG

734 posts

263 months

Monday 24th August 2015
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Hi there
we have an adopted daughter. The signs of Autism and the signs of Attachment Disorder can be very very similar. Most of what you write sounds familiar! Good luck with your visit to the Dr. I hope things improve. S

AMLK

407 posts

184 months

Thursday 27th August 2015
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Does anyone have any experience with melatonin? My daughter's school have suggested that it might benefit her as she is having real problems sleeping. She says when she goes to bed bad thoughts come and she struggles switching off.
We went to the GP today. He thinks she would benefit but only a paediatric can prescribe it. He has referred her hoping they will tie the referral in with her Aspergers referral.
We are currently trying her on Bach's night rescue.
Any advice or suggestions would be very welcome.
Sorry for hijacking your thread oldbanger.

oldbanger

Original Poster:

4,316 posts

237 months

Sunday 30th August 2015
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As an update, we don't have any CAMHS services in the area at the moment. GP has advised we self refer to an autism centre.

What is interesting is the similarities between attachment disorder and autism symptoms. I've found a journal article which has a grid comparing the two and it does look a bit more like attachment disorder. frown

TNJ

408 posts

161 months

Wednesday 2nd September 2015
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I was wondering if anyone can shed any light on what is involved in making a formal diagnosis of autism/Aspergers?

My son has always shown signs of autism/Aspergers - not severe but enough for us to suspect that something was wrong. The main problems have manifested themselves at school - disruptive, calling out, disorganised, lack of attention and concentration, difficulty making friends, etc.

In short, this has led to a referral to the local NHS paediatric/mental health clinic and we had a meeting with one of the doctors yesterday. The upshot is a suspicion of a "social/communication problem" which could well be autism/Aspergers.

They have now given us the option of proceeding to a full diagnosis - this would be classroom observation (a day when someone would sit in the class and observe his behavious - albeit he would not be told that they were there to observe him), then a half or full day assessment at the clinic as well as interviews/questions for us as his parents.

Whilst I would like to know the diagnosis so we can help him as best we can, I am also wary of freaking him out and making matters worse. He pretty much flipped when the suspicion of autism/Apsergers was mentioned as he thought this meant he was weird/disabled/an outcast etc etc. It took a while to calm him down and explain that it is nothing of the sort.

So, in summary, I would be grateful to understand if anyone else has been through this and how they found the process - and particularly if any benefit came from it.

AMLK

407 posts

184 months

Wednesday 30th September 2015
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We have just received a letter to say we are on the waiting list for our daughter to see a paediatrician, hopefully this means we will get seen relatively soon.

I have been doing a lot of research on Asperger's and have found this has really helped in dealing with our daughter as we understand her better, consequently this has meant everything at home has been so much easier. She is loving school, partly by the things they have put in place to help her and partly because she has a fab teacher and head teacher to support her.

Our only issue now is the after school club she attends, despite talking with them they seem to have no understanding of her. For example on Mon she had a complete meltdown because someone vomited in the hall (she has ocd regarding cleanliness). The staff ignored her and it was down to a 9yr old boy to talk to her and calm her down. We are thinking of taking her out of the club, fortunately we are in a position we can do this.

Hope everyone else is getting on ok.

oldbanger

Original Poster:

4,316 posts

237 months

Saturday 10th October 2015
quotequote all
Just by way of an update, the school think she's fine, which has knocked any referral on the head.

Our adoption social worker,from our description if behaviour on the phone,considers attachment issues the most likely scenario and suggested a few things to try.

Things are a bit calmer now the kids are settled back at school so fingers crossed it stays that way.




oldbanger

Original Poster:

4,316 posts

237 months

Saturday 10th October 2015
quotequote all
AMLK said:
Does anyone have any experience with melatonin? My daughter's school have suggested that it might benefit her as she is having real problems sleeping. She says when she goes to bed bad thoughts come and she struggles switching off.
We went to the GP today. He thinks she would benefit but only a paediatric can prescribe it. He has referred her hoping they will tie the referral in with her Aspergers referral.
We are currently trying her on Bach's night rescue.
Any advice or suggestions would be very welcome.
Sorry for hijacking your thread oldbanger.
Just noticed you never got a reply - sorry

I have no experience of melantonin. I have a mindfulness for kids bedtime cd which seems to help a bit.

AMLK

407 posts

184 months

Wednesday 14th October 2015
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Thanks for your reply. She has come to rely on listening to music or an audio book to get to sleep. We have also tried Bach's night rescue remedy and that seems to help.
Generally things seem ok most of the time, but we still get wobbles occasionally. Still waiting on her referral, hopefully soon. We are also investigating high schools, we have two options so we are visiting both to see what support systems they have.

I am glad things have settled down on your side, I hope it stays that way.

cwis

1,147 posts

178 months

Friday 16th October 2015
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Hello.

As a high functioning Asperger's adult if I can help I'd like to. If you have any questions or you want a viewpoint about a situation "from the other side" either post here or sent me a message.

AMLK

407 posts

184 months

Sunday 25th October 2015
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Thanks cwis that is very kind of you.
Do you mind me asking what kind of job you do? My daughter would like to be a vet or an SSPCA officer. My concerns with this is firstly she is scared of dogs (something we can work on), but more problematic is the she has ocd regarding hygiene and cleanliness.
We have got a visit this week at a high school out of our catchment area. Any questions we should be asking?
Her head teacher is arranging a visit to the high school she would automatically go, which she will attend with us to see what support they can offer.
Thanks.

cwis

1,147 posts

178 months

Monday 26th October 2015
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AMLK said:
Thanks cwis that is very kind of you.
Do you mind me asking what kind of job you do? My daughter would like to be a vet or an SSPCA officer. My concerns with this is firstly she is scared of dogs (something we can work on), but more problematic is the she has ocd regarding hygiene and cleanliness.
We have got a visit this week at a high school out of our catchment area. Any questions we should be asking?
Her head teacher is arranging a visit to the high school she would automatically go, which she will attend with us to see what support they can offer.
Thanks.
I'm fairly typically an IT type person - I had no idea what I wanted to do when I was little and kind of fell into IT - it's a good match I suppose.

Just keep in mind while you read this that we're all different by the way - shades of grey. I'll advise based on my experiences but there's no black and white (which annoys the Asperger's side of me immensely!)

One social aspect of Asperger's is the whole interaction thing. If you can't instinctively and unconsciously read body language you have to work out what is going on using your conscious mind and a mental "cheat sheet" of expressions and social cues based on past experience. It's one of the reasons social events (especially with strangers) can be exhausting - the brain tends to be flat out working out what is going on.

There are advantages - I tend to do really well in interviews for example, because they are a social events with fairly well defined rules - eye contact, no fidgeting, shake hands at the start and end, etc. Weddings on the other hand I tend to avoid!

Being scared of dogs is probably because they can be noisy and unpredictable and move quickly and suddenly and your daughter isn't aware of the "rules" - how to interact with them. Avoidance is then preferred. I remember being similar when I was small...

One way around this is probably to learn their body language and then let her observe them (without "forced" interaction) until she gets a degree of confidence as to what they are going to do in a given situation - let her build up a "cheat sheet" for dogs. There's an excellent poster here:

http://www.zazzle.com/doggie_language_large_poster...

The cleanliness and ocd side could be related to sensation. Talk it through because all of these quirks will have a logical reason.

For example I have an aversion (initially!) to getting my hands wet, especially with cold water - if I'm in the kitchen I'll tend to avoid it until I have no choice and then mentally "man up" and do it, and then I'm fine with wet hands. It's a bit like jumping into a plunge pool (for me) because of the sensation, if that makes sense.

School wise: Social practice starts here and this is where the toolbox of social responses etc is built. Learning is secondary really... Anything she gets interested in she will learn. Making things interesting will be the key but you can also use logic to explain why she should know about things she isn't interested in...

A "strict" school with rigidly defined rules would create an environment where once the rules are known she could relax about that bit and work on the people bit. For example a uniform policy removes the option (and the stress) of choosing clothes every day.

Bullying should not be tolerated - she could be targeted being slightly "different" but again if she has a toolbox of responses etc she should be fine - confidence is everything.

I'm a bit time pressed here so I'll post this - any questions, ask!