HI FROM A NEW MEMBER

[Wenders]

Hi,

 

I am a mum of 2 children 10 year old daughter with suspected AS and speech and language difficulties and a 5 year old son with speech delay.

 

It has been a relief to find this site. I can identify with so many other families. My daughter is socially isolated in school, is anxious, shy and not thriving academically at all. It seems as though this year she has gone backwards despite being on school action plus and having extra help.

 

My daughter doesn't get invited to her classmates houses for tea, no invites to parties despite my efforts to invited school friends over and have days out. My daughter has been bullied and labelled an 'attention seeker' by her classmates which she is so confused about.

 

At different times I have been labelled an overprotective mum, interferring and then at other times it has been suggested that I don't help my daughter enough to socially interact. I have taken my daughter to various clubs since she was about 2yrs old and stay and help out, am an active member of the school parents association and help with guided reading at school as well as holding down a full-time job.

 

We are awaiting a referral to CAMHS and are hopefully that she will finally receive a diagnosis as my daughter displays a lot of AS traits. I would be grateful for any advice about what to expect from the referral and also any experiences any members have of AS girls as she is very passive.

 

Thanks for taking the time to read this.

 

Wendy xx

[Emma_74]

Hi and welcome Wenders

 

I cant offer any advice as i only have boys

 

Emma

 

[Karen A]

Hi Wendy Welcome to the Forum.

I have Ben who is 10 and has AS.He is obviously not a girl and passive is not a term that would be accurate.

However there is a very interesting old thread regarding children with ASD that are passive.I will see if I can find a link.Karen.

[Tally]

Hi Wendy, and welcome to the forum.

 

I am an adult with AS. I have met several other adults with AS too. From what I have seen, women with AS are commonly very passive and quiet, whereas men are more talkative (often on and on endlessly about the same topic). There are obviously people who don't fit those descriptions, but this is the general trend I have seen. Because of this, women and girls often don't seem to fit the stereotypes, which can make diagnosis more complicated.

 

I was only diagnosed as an adult, so I have no experience of CAMHS, but it is likely your daughter will be seen by a variety of professionals, and they will also discuss things with you, and eventually come to a conclusion - hopefully a diagnosis which helps you access the right support for your daughter!

[Karen A]

http://www.asd-forum.org.uk/forum/index.ph...rmal+pretending

 

Hi again.This is the thread that might be interesting reading. Karen.

[A and A]

Hi,

 

I am a mum of 2 children 10 year old daughter with suspected AS and speech and language difficulties and a 5 year old son with speech delay.

 

It has been a relief to find this site. I can identify with so many other families. My daughter is socially isolated in school, is anxious, shy and not thriving academically at all. It seems as though this year she has gone backwards despite being on school action plus and having extra help.

 

My daughter doesn't get invited to her classmates houses for tea, no invites to parties despite my efforts to invited school friends over and have days out. My daughter has been bullied and labelled an 'attention seeker' by her classmates which she is so confused about.

 

At different times I have been labelled an overprotective mum, interferring and then at other times it has been suggested that I don't help my daughter enough to socially interact. I have taken my daughter to various clubs since she was about 2yrs old and stay and help out, am an active member of the school parents association and help with guided reading at school as well as holding down a full-time job.

 

We are awaiting a referral to CAMHS and are hopefully that she will finally receive a diagnosis as my daughter displays a lot of AS traits. I would be grateful for any advice about what to expect from the referral and also any experiences any members have of AS girls as she is very passive.

 

 

Thanks for taking the time to read this.

 

Wendy xx

hi there i agree that this site has been great to help, we are just struggling with our emotions at the moment, just finding it hard to understand what is happening. Can you help when reading peoples comments they say DS what does this mean as we have sussed the other abreviations but not this one. What are are you from as we are hoping to meet other families near to us. Anna and Anthony

[Tally]

DS=Dear Son.

 

You might find the forum abbreviations thread helpful. You can find it here: http://www.asd-forum.org.uk/forum/index.php?showtopic=5648

 

Soon you will be fluent in forum-speak!

[julie1]

hello, i have 4 children, ds aged 13 autism, dd2 speach and language disorder and social communication disorder aged 11, dd3 just fine, dd4 lots of issues waiting camhs, There were several arguments over my dd diagnosis as they were not sure if it was aspergers or not so she was labled social communication disorder instead, i was not to bothered about the diagnosis as we were able to get her into a very good private school via tribunal. the pannel were not bothered about diagnosis as we had a lot of evidence regarding her SEN. But i do no for others the lable is very important. In fact im now going to tribunal again about ds diagnosis he has autism but th LA describe him as having aspergers.

[sadie]

Hi, Wenders, and welcome.

We have a 14 yr old AS daughter....though we have no formal diagnosis. She is very passive, eager to please, very biddable and hence very vulnerable. She has no friends but seems to be quite content at the moment. She appears to be quite happy being with animals and spends most of her time with them. Animals aside she likes cross stitch, knitting or patchwork whilst watching the one eyed monster (the tv) thus avoiding the necessity of communication.

We have had the involvement of CAMHS during a stressful family period...you will find a lot of different view about them here..but personally I found them quite helpful.

DD currently attends an ASD unit within a special school. She attended mainstream nursery but it didn't meet her needs and she has been at specialist units since then.

Outside of school DD joins in many 'mainstream' activities eg guides and choir but the activities have to be fairly structured and she is not able to travel independently. Once there though she participates fully but forms no relationships.

If you have any questions I'd be happy to try to answer.

 

Sadie

[Mum of 3]

Hi Wenders, welcome

[smiley1590]

heya -i'm 19 years old female with AS n other things too! lol but can relate alot to what you said really! lol hehe

 

has your five year old son been tested for AS/ASD etc as he has speech dealy too?

i have AS was officially diagnosed by CAMHS! by refferal made i hope what my personal experiences bring comfort to you though! my mum was called 'an overprotective mother' i think alot people with AS parents are a common thing to happen within the misunderstandings and judgements made

 

the SENCO at my juniors school actually told me my mum that what a blimin cheek! she wouldn't accept there was anything 'wrong' with me that had medical condition-dyspraxia like my mum make that up yeah whatever to hear that side of things makes me so mad and angry towards societys idiotic comments towards people like us and our families disgusting! i determined to prove 'a success story'to 'jam;'' the words down the throat as every 'doubter'!

 

i had SL difficulties when younger i had S.L.T at local hospital now weirdly where i go to help me cope and deal with AS from support of MH OT my mum always believed there something else NOT JUST dyspraxia another thing years later through having MH probs in my early teen found out was AS!

 

i was bullied in every which ways for years me coming home in floods of tears thinking and believing it was my fault i deserved it to happen to me not telling anyone lowered my self-esteem/confidence happened over years because i was 'different' to the others in the playground i didn't play -isolated ,confused ,frustrated just like your daugther is many people with AS experience similar things common stories! i don't think you ever fully recover even years after the affects stil, stay and haunt you so much people don't see that side and it so painful at times so revisit what happened! bet it's affected your daugther in so many ways dyspraxia and AS other ASD's lower your self-esteem anyway then someone to do that doesn't help matters in your life and head! reassurance and praise trust care etc help me work my way back up but i don't think i'll ever be fully there but something's better than nothing! lol

 

does school help put coping ways in place and support your daugther well? even though she hasn;t got an official diagnosis yet i'd set up an I.E.P when you get one does she have one to one support ? LSA?

 

CAMHS may look into social isolation with you and her and help overcome this with different services they may refer to or do themselves! your daughter may have common MH prob with A.S which is Social Anxiety Disorder which they may pick on and find when do assesment for diagnosis! i have social anx disorder! but can just be part of the AS sign too! may seem like long road to go down but once 'explored' not so scary!

 

take care

good luck with everything!

love ya loadz

XKLX

[smiley1590]

i NEVER used to got invited to class mates houses for tea or birthday parties used to wonder why they did this for! used to think it was me being bad naughty i wasn't nice or kind enough to deserve to go! but now know that social isolation linked closely with AS! this where AS helps piece back past events so connect and see what really went on! alot people with AS socially find hard and difficult to get socially accepted within any group in school! used to break my mum's heart to see me disappointed and let down frustrated!

[Wenders]

http://www.asd-forum.org.uk/forum/index.ph...rmal+pretending

 

Hi again.This is the thread that might be interesting reading. Karen.

 

 

Thanks Karen A it made very interesting reading. It's a relief to know that our family aren't the only people going through this and restored a bit of my faith in human nature.

 

Thanks again!

[Wenders]

Hi, Wenders, and welcome.

We have a 14 yr old AS daughter....though we have no formal diagnosis. She is very passive, eager to please, very biddable and hence very vulnerable. She has no friends but seems to be quite content at the moment. She appears to be quite happy being with animals and spends most of her time with them. Animals aside she likes cross stitch, knitting or patchwork whilst watching the one eyed monster (the tv) thus avoiding the necessity of communication.

We have had the involvement of CAMHS during a stressful family period...you will find a lot of different view about them here..but personally I found them quite helpful.

DD currently attends an ASD unit within a special school. She attended mainstream nursery but it didn't meet her needs and she has been at specialist units since then.

Outside of school DD joins in many 'mainstream' activities eg guides and choir but the activities have to be fairly structured and she is not able to travel independently. Once there though she participates fully but forms no relationships.

If you have any questions I'd be happy to try to answer.

 

Sadie

 

Hi Sadie,

Thanks for your reply it is really appreciated! I noted that your DD doesn't have a formal diagnosis but she attends a special school within an ASD unit. My understanding has been that my child would have to be diagnosed & statemented before she can have access to this type of education. Is this not the case?

 

We are fast heading into the last year of primary school and I can feel my anxiety levels rising at the prospect of moving her to senior school, I have no idea how she will cope.

[Wenders]

heya -i'm 19 years old female with AS n other things too! lol but can relate alot to what you said really! lol hehe

 

has your five year old son been tested for AS/ASD etc as he has speech dealy too?

i have AS was officially diagnosed by CAMHS! by refferal made i hope what my personal experiences bring comfort to you though! my mum was called 'an overprotective mother' i think alot people with AS parents are a common thing to happen within the misunderstandings and judgements made

 

the SENCO at my juniors school actually told me my mum that what a blimin cheek! she wouldn't accept there was anything 'wrong' with me that had medical condition-dyspraxia like my mum make that up yeah whatever to hear that side of things makes me so mad and angry towards societys idiotic comments towards people like us and our families disgusting! i determined to prove 'a success story'to 'jam;'' the words down the throat as every 'doubter'!

 

i had SL difficulties when younger i had S.L.T at local hospital now weirdly where i go to help me cope and deal with AS from support of MH OT my mum always believed there something else NOT JUST dyspraxia another thing years later through having MH probs in my early teen found out was AS!

 

i was bullied in every which ways for years me coming home in floods of tears thinking and believing it was my fault i deserved it to happen to me not telling anyone lowered my self-esteem/confidence happened over years because i was 'different' to the others in the playground i didn't play -isolated ,confused ,frustrated just like your daugther is many people with AS experience similar things common stories! i don't think you ever fully recover even years after the affects stil, stay and haunt you so much people don't see that side and it so painful at times so revisit what happened! bet it's affected your daugther in so many ways dyspraxia and AS other ASD's lower your self-esteem anyway then someone to do that doesn't help matters in your life and head! reassurance and praise trust care etc help me work my way back up but i don't think i'll ever be fully there but something's better than nothing! lol

 

does school help put coping ways in place and support your daugther well? even though she hasn;t got an official diagnosis yet i'd set up an I.E.P when you get one does she have one to one support ? LSA?

 

CAMHS may look into social isolation with you and her and help overcome this with different services they may refer to or do themselves! your daughter may have common MH prob with A.S which is Social Anxiety Disorder which they may pick on and find when do assesment for diagnosis! i have social anx disorder! but can just be part of the AS sign too! may seem like long road to go down but once 'explored' not so scary!

 

take care

good luck with everything!

love ya loadz

XKLX

 

 

Thanks Smiley1590, what a lovely person you are! Well done on you for your determination to prove everyone wrong, I wish you loads of luck.

 

My son hasn't been tested for AS/ASD, he doesn't let his language delay get in the way and makes up for his difficulties in other ways and as far as I can see he is pretty well liked in school. The school have given him an IEP and a support strategy is in place so I am hopeful that all is going to turn out well.

 

My daughter has been on SEN register since starting school and is on school action plus and has a couple of hours of support per week either in a small group or sometimes, if she is lucky 1-1. Her teacher recently threw up her hands in a meeting and said that she didn't know how to help her, that they had done everything that they could think of and they need extra help. I suppose that this has been a relief but I wish that I had been listened to a lot more 4 years ago - I guess my instincts were right, but you tend to doubt yourself and think that the professionals must know what they are talkiing about. With regards to coping strategies, I don't think that the school has a clue.

 

You are right, my DD is very affected by the bullying and isolation & desperately wants friendships. I recently tried to have a light hearted talk about it with her and she ended up in floods of tears. I am reluctant to discuss this outside of my close family and friends especially with parents at the school because I think that this information may be used against her by small minded parents & equally cruel children.

 

I was wondering what you are doing now, are you in college or working? Have you had any support with this? Do you find that you receive more understanding as you get older because hopefully at some point people mature, or am I just being ideallistic?

 

Thanks again x

 

 

[Thompsons]

Hi Wendy

 

I'm an 18 year old girl with Aspergers (my official assessment at Bethlem Hospital is in September) and I am also very shy. I don't do well in social situations and I don't have any friends..

 

I have a social support worker who has just started me once a week at a group for people with mental health issues, to get me used to socialising. I wonder if there's anything like that that could be done for your daughter? I know I need to start socialising as I am very isolated and I would like to be able to go to college or have a job, but am unable to because of my difficulties at the moment. I go to the group with my support worker as I don't feel comfortable going on my own yet and we've started off slowly, with me only having to go for 20 minutes. We'll eventually work the time up a bit, and hopefully I can go on my own too. I find people my age really don't understand me and I get very intimidated; I'm more comfortable with chatting to some of the elderly members at the moment - it's a start.

 

How about something like a pen pal? I find it so much easier to chat online or write than to actually talk to people. It may just boost her confidence a little

[smiley1590]

have you been tested for AS social anxiety disorder yourself as the parent?! XXXKLXXX

[Wenders]

have you been tested for AS social anxiety disorder yourself as the parent?! XXXKLXXX

 

No I haven't....YET!!! I think I will definitely ended up with some sort of disorder at the end of this!!!!

[sadie]

Hi again Wenders

 

My DD goes to a LEA EBD/MLD secondary school ... I thought it the best 'fit' at the time and am still quite happy with it.

Initially she attended classes with the main body of the school but because of her difficulties at the time ( strong OCD behaviours - exacerbated by family problems) the teachers couldn't cope and they asked my permission to have her in the ASD unit. I didn't truthfully want that at the time but it was the best thing that could have happened....my DD had a lot of time devoted to her and input from SALT. She is now happily re-integrating with the mainstream but still has that little extra help.

 

If I had asked I think she could have gone straight to the ASD unit from primary but I didn't consider it at the time. (The difference to your situation is that, apart from nursery, my DD has always been in special education and once in it's easier to insist on it's continuing I think). If I had wanted her to go to a specialist independent ASD school my DD wouldn't have stood a chance without a proper diagnosis.

 

I think that each LEA will have different criteria with regards to attending ASD units.... maybe I just struck lucky.

 

Hoping you manage to sort out your DD's education to your satisfaction.

 

Sadie

[smiley1590]

do you think you may have chance of having AS or social anxiety? WB X sorry if upset or offended anyone by this! XKLX do you fit any AS signs youself?

[Wenders]

do you think you may have chance of having AS or social anxiety? WB X sorry if upset or offended anyone by this! XKLX do you fit any AS signs youself?

 

 

You didn't upset me, I thought that your comment was quite funny

I am not sure whether I have any signs AS or social anxiety although I do identify with some of the symptoms. I am a quiet person and not great at socialising but I just though that was me.

[Kathryn]

Welcome to the forum, Wenders

 

K x

[smiley1590]

wenders i think over getting tested yourself as you can relate to the signs and find socialising hard and difficultm -an effort alot people that thought 'just me bing me' that as an adult slipped through the diagnosis sector so i go to docs and see about getting assessed as likely that if child has spectrum disorder the parent/s can to though not always the case! alot of adults are now starting to come through the system after realising it isn't just them it's actual medical condition! just like you! as sometimes comes up to light when child going through assessment and official diagnosis of ASD themselves as signs are then brought to the surface and signs are recognised!? bet your daughter thought same as you it was her being her nothing else there! but when looked deeper ASD can be found just hidden below surface!

 

what signs do u show? have you always felt 'different' to others? bet ASD wasn't heard of when you was younger as suffering from?!

 

take care

good luck

XKX