Could our daughter have Aspergers?

[Bagpuss]

Hi,

 

Anyone whose read my previous posts will know that our eldest daughter was misdiagnosed with Autism when she was 2. This came about because her speech was very delayed, and she was referred to a Child Development Centre. They assessed her, within their nursery, for 4 weeks. She was assessed by various people, and spent a couple of hours one day a week in the nursery. At the end of the assessement we were told by the paed. that she was autistic. On the higher end of the spectrum. We were shocked and very upset. No one had even mentioned ASD to us as a possibility, and we had assumed it was something and nothing. We disagreed wholeheartedly with the diagnosis, and although we liked all the professionals dealing with us, we were kind of treated like parents in denial. Eventually when she reached 4, she was evaluated by 2 ed. psych's for the purpose of starting school. By this point her speech had developed to an extent that she was pretty much at the level she should be. Both ed psych' s agreed with us that she was not ASD and the diagnosis was reversed. Felt very smug at the time...........however, over the last few years we've become quite concerned about her. Not sure if we are over reacting (because we've since had our youngest diagnosed with ASD) or if there are real causes for concern and would welcome your opinions on this. She is doing well at school, above average intelligence, has friends, is very talkative etc etc.....nothing really which grabs you on first glance. But she also has some very strange "quirks".....her speech can be very precise and formal, she finds it difficult to read facial expressions and understand jokes with double meanings, she does not understand it when a friend is being mean to her and quite often thinks they are being nice, she tends to believe what she is being told even if it's quite clearly untrue, tends to stick to rigid rules of behaviour, is completely obsessed with pokemon..to the exclusion of all other toys and only wants to play/talk about that, she is very fussy about her clothes to the extent that collars/labels/length of socks really upset her (its nothing to do with fashion, and although shes 8, she doesn't have any sense of fashion), she doesn't like noisy, crowded places.... Now, we've had a chat with school, and her teacher thinks there is nothing to be concerned over. She said our daughter reminds her of a 1940's child in that she is very polite etc, she said she does tend to prefer to sit out /at back during group sessions, and if asked to do anything new (like refill a water bottle) will become very upset.......which made me more not less suspicious to be honest. What do you think, should we be taking this further or are we seeing something that's nothing to worry about?

 

Debs x

[jb1964]

Hi Debs,

 

How old is your daughter? I would have understand if they'd diagnosed autism and changed it later to ASD/AS etc - but find it strange for them to dismiss it altogether - how long did the Ed.Psych. assess her for? I know with my daughter she had weekly visits over a six month period plus home visits by CAHMS before they diagnosed - yet the Ed.Psych. saw her for 2 x 1/2hr sessions - which is never long enough to assess anything.

 

I personally think that it is very difficult for any doctor/paed./consultant/professional to come to a correct conclusion with diagnosis after an hour or two assessment (unless of course they are classic symptoms - but even then all children are different).

 

My daughters been under a Paed since birth for various reasons (although now after reading all the info - know that all the reasons were linked to her AS) - when she was around 3yrs I can remember him saying how pleased he was with her behaviour as he did have concerns about possible autism (this was the first time mentioned) - but that now she was developing normally he could dismiss those fears.

 

He continued to see her between 2-6 times per year until she was 11yrs old - and never suggested there was a problem or wanted to listen to anything we had to say. He referred her to CAHMS because he thought she had an eating disorder and she underwent a lengthy assessment where they diagnosed AS - although the CPN who saw us on the very first visit - told me on the second visit to start reading up on AS because she told me that after spending 15mins watching my daughter on the first visit she was convinced she had it.

 

She said our daughter reminds her of a 1940's child in that she is very polite etc

 

This was the description that my daughter had from all her teachers all the way through school - that she was very old fashioned etc and lots of other problems she had (i.e. socialising/routines/playground problems etc) were nothing to worry about. It wasn't until she hit comp. that everything went into massive overload.

 

Hope you get some good advice soon.

Take care,

Jb

Edited May 9, 2006 by jb1964

[board]

hello some things you say sound like my daughter she is 6 dx aspergers on the 12 of last month i think you need to look in to it more to see if she is if she ant you got nothing to loss but if they find she is you canget the help wail she is still young a mother knows all the best jill

[Bagpuss]

Hi jb,

 

Our daughter is 8 now. She was diagnosed at 2 and continually seen up until the age of 4 when ed pysch agreed with us that she was not autistic and diagnosis reversed. Nobody saw her after that. Once her speech developed they felt the other difficulties ie social interaction and imagination were less present. Her teacher also used the term "old fashioned" when describing her, as with your child. My hubby is 100% convinced she has Aspergers and the original diagnosis wasn't infact wrong........unfortunately its only over the past few years that we've become concerned. He wants to take it further than speaking to her teacher and feels once she starts secondary school in a few years we will be in for huge problems if we don't get it addressed now. Even our 12 year old son sometimes looks at her with a quizzical look on his face when she says something bizarre, so I'm assuming he is noticing. Last week she asked us what "sorry" means, although she always says it repeatedly if she knows we are cross with her about something. Surely at 8 she should be able to understand what "sorry" means. Not so long ago I was walking home with her from school and another mum and child (whose in our daughters class). The mum was telling me how her daughter had been hit by a car some years ago, before we moved here. Our daughter piped up " oh wouldn't it be great if J (our youngest) got hit by a car then she would stop screaming" then she began laughing hysterically while me and other mum stared at her in horror. When she realised she had said something inappropriate she just kept repeating "im sorry, im sorry, im sorry".....we've had a few incidents like this.

 

Board, thankyou also for your reply and advice. Its much appreciated .

 

Debs x

[Suze]

Gosh, I,ve never heard of an ed physch actually having the authorisation to do this!!.........it,s quite shocking..........especially as they will have just viewed your daughter in a school setting and come to this conclusion.I would get a refferal via your gp and get your daughter re-assessed.Your husbands correct high school etc is,nt far away, and that could bring on a heap of problems for your daughter.good luck suze.

[Bagpuss]

Suze,

 

I don't think the diagnosis was reversed purely from the opinion of the two ed pysch's. I think it was a case that they became involved 2 years after diagnosis, by which point our daughter was nothing like she had been at 2. It was more like a slow realisation on everyones part that maybe she wasnt on the spectrum, plus we were adamant she wasn't, so were more than happy to agree with ed pysch's. We didn't question it because we wanted to be proved right I suppose and believe she wasn't autistic. Hmmmm......now, with the benefit of hindsight I think we made a huge mistake

 

Debs x

[oracle]

Excuse me but my understanding is that ed pyshc's don't have the qualifications to diagnose at all let alone overturn it. I hear what you are saying that there was more to it than that - but what exactly?

 

My son is now 9 and is still seen on a regular basis for a reassessment of his dx. I don't mind this at all in fact I welcome it because I don't want a him stuck with an inappropriate label. However for his dx to be overturned it would require a full reassessment from the multi agency team that is involved in these things, and I would then expect it in writing.

 

It is my understanding that girls can often mask the ASD in a way which boys are unable to do and a great deal of what you have posted does sound like spectrum traits. But I would want to go back and start from scratch if I had these doubts.

 

All you can do is to be honest. If I had to put the clock back to when my two were diagnosed and had to answers the questions about my eldest 'NT' son all over again, I will tell you now the answers I would give today would be totally different, because I now have a good all round knowledge of autism and I did not then. My eldest may not actually be on the spectrum but my goodness does he have some traits. I thought that because he was social and outgoing to the point that he is a DJ and also quite a good actor that that ruled ASD out. What I did not realise was that you can be outgoing and still have and ASD. My eldest is probably the most inappropriate one of my three sons and there are other issues, which scream ASD at me. What I am trying to say is that when we have the knowledge that it allows to look at things with a different eye. If in doubt rule it out.

 

Oracle

[yoyo]

She is doing well at school, above average intelligence, has friends, is very talkative etc etc.....nothing really which grabs you on first glance. But she also has some very strange "quirks".....her speech can be very precise and formal, she finds it difficult to read facial expressions and understand jokes with double meanings, she does not understand it when a friend is being mean to her and quite often thinks they are being nice, she tends to believe what she is being told even if it's quite clearly untrue, tends to stick to rigid rules of behaviour,..........

 

she is very fussy about her clothes to the extent that collars/labels/length of socks really upset her (its nothing to do with fashion, and although shes 8, she doesn't have any sense of fashion), she doesn't like noisy, crowded places.... Now, we've had a chat with school, and her teacher thinks there is nothing to be concerned over. She said our daughter reminds her of a 1940's child in that she is very polite etc, she said she does tend to prefer to sit out /at back during group sessions, and if asked to do anything new (like refill a water bottle) will become very upset..

 

Hi Debs,

 

I am undiagnosed adult, but your daughter's traits are so similar to mine at that age. My obsessions were different - cars, trains and music. I can also identify with the girl in an above post referring to her sister being hit by a car etc. I used to blurt out things like this and feel dreadful afterwards. I still have weird thoughts but manage to keep them to myself. I hope you can ascertain an accurate assessment for your daughter and that she will obtain the help and support she needs.

 

Best wishes

Gill

[Bagpuss]

We were the same Oracle. When our eldest was diagnosed we asked for further information and we were given a book to read. Can't remember what it was called, but it made for horrific reading I remember reading this book thinking "this isn't our daughter". We were asked some months later by SALT at the Child Development Centre if it was the "label" of ASD that concerned us, rather than the diagnosis From what I knew of ASD at that time my daughter was not ASD, she just had significant delay in speech. We saw imaginative play, and also felt the poor social interaction was due to lack of speech and she would be "right as rain" once she began talking Now, having learnt more, I'd be more cautious and not so black and white in my opinion. I know that when she was assessed by the two Ed Pych's they were adamant she was not autistic. They were both appalled that our daughter had been diagnosed so young, and her SALT ( the community one) also felt her she had made a mistake referring her to Child Development Centre feeling she may be on spectrum. She said she hadn't seen a child whose speech had developed so rapidly, and felt she was seeing a different little girl. It was such a confusing 2 years We had another appt with new paed, and were told that she was now felt not to be on the spectrum. We should of questioned this but just felt overjoyed. Infact found it diffiuclt not to jump up and kiss the paed There was no mention of another assessment being carried out. Our present ed psych had a huge imput in our youngest diagnosis. There was so much indecision as to weather our youngest was or was not ASD that she did a DISCO interview. This clearly showed our daughter was on the spectrum and the diagnosis was given. Not sure when or if we would of got diagnosis otherwise. Thanks again for your advice.

 

Gill, thanks for your reply. Would it of been easier for you if you had been diagnosed at a younger age? Our youngest has an appt with the paed next week, and he's questioned us briefly about our eldest misdiagnosis.....may take the opportunity to ask his advice about it. I know my hubby is keen to try and get an assessment because he thinks its vital in terms of her future welfare, although I'm worried, feeling that everyone will feel we are over reacting. Will keep you posted, and thanks again, appreciate it.

 

Debs x

 

Debs x

Edited May 9, 2006 by Bagpuss

[jb1964]

Hi jb,

 

Our daughter is 8 now. She was diagnosed at 2 and continually seen up until the age of 4 when ed pysch agreed with us that she was not autistic and diagnosis reversed. Nobody saw her after that. Once her speech developed they felt the other difficulties ie social interaction and imagination were less present. Her teacher also used the term "old fashioned" when describing her, as with your child. My hubby is 100% convinced she has Aspergers and the original diagnosis wasn't infact wrong........unfortunately its only over the past few years that we've become concerned. He wants to take it further than speaking to her teacher and feels once she starts secondary school in a few years we will be in for huge problems if we don't get it addressed now. Even our 12 year old son sometimes looks at her with a quizzical look on his face when she says something bizarre, so I'm assuming he is noticing. Last week she asked us what "sorry" means, although she always says it repeatedly if she knows we are cross with her about something. Surely at 8 she should be able to understand what "sorry" means. Not so long ago I was walking home with her from school and another mum and child (whose in our daughters class). The mum was telling me how her daughter had been hit by a car some years ago, before we moved here. Our daughter piped up " oh wouldn't it be great if J (our youngest) got hit by a car then she would stop screaming" then she began laughing hysterically while me and other mum stared at her in horror. When she realised she had said something inappropriate she just kept repeating "im sorry, im sorry, im sorry".....we've had a few incidents like this.

 

Board, thankyou also for your reply and advice. Its much appreciated .

 

Debs x

 

Hi Debs,

 

I can totally relate to what you're saying as she's 8 now. Everything you have written is so my daughter. When my daughter was younger - probably I would say up to 7/8yrs we put lots of her behaviour down to either medical problems she had or that she was naive/young for her age etc. But once she got to this age we started to think exactly as you do that surely at this age she shouldn't be doing or saying that - or she should understand this etc. The older she's got the more apparent this has become - she's now 12yrs and it smacks you in the face.

 

I too can only reiterate what your husband is saying about the problems becoming massive when they get to 11/12yrs - as we found out with our daughter when she started comp - the passive child at school thing goes out through the window.

 

Hope you get some progress on this - you need to start the ball rolling now - see your GP - or can you refer back to the original Paed. that diagnosed her?

 

Take care

Jb

[Bagpuss]

Jb,

 

Thanks again for your wonderful advice. Unfortunately we can't be referred back to original paed as we have moved from Lancashire to Cleveland. Hopefully they would still be able to access her notes. Our youngest is seen by a really nice paed here, and is due to be seen again this month. We have decided to write down all the things we are concerned about re. our eldest daughter, and ask his opinion. He was quite interested in what had happened with our eldest daughter when he first saw our youngest....sorry, this sounds very confusing Another reason I've become more concerned is that during this Early Bird Plus course we are doing, I'm recognising alot of my eldest daughter Luckily we have a really good relationship with the paed and ed psych here, and have seen them regularly for years and trust their judgement, so we know we can turn to them for advice. I don't think putting it off and dismissing it any longer will be beneficial. I've pushed it to the back of my mind for a few years now. I know my hubby is right when he says he's concerned about her starting secondary school.......she's bright as a button and to those at school just appears to be a model pupil but she's so naive and i cannot even imagine her being able to find her way round a big school without becoming distressed. Unless she's told absolutely clearly what to do or where to go, she panics. Also now she's 8, some of her friends are forming little cliques etc and talking about boys/fashion, but it goes completely over her head. She thinks they want to talk about pokemon .....and wants to discuss that with them all the time. I feel its just a matter of time before she finds herself excluded from these groups, and hubby's right, the older she gets the worse it will get for her. Not that it bothers her, she doesn't seem to mind if she has no one to play with someone is being mean........She even moved schools without a backward glance at her friends, whilst our son was in tears saying goodbye Will let you know how it goes with pead when we bring up our concerns, and thanks again jb.

 

Debs x

[jb1964]

Hi Debs,

 

Yet again everything you write I've seen already in my daughter.

 

Good luck and take care,

Jb

[yoyo]

Jb,

 

Thanks again for your wonderful advice. Unfortunately we can't be referred back to original paed as we have moved from Lancashire to Cleveland. Hopefully they would still be able to access her notes. Our youngest is seen by a really nice paed here, and is due to be seen again this month. We have decided to write down all the things we are concerned about re. our eldest daughter, and ask his opinion. He was quite interested in what had happened with our eldest daughter when he first saw our youngest....sorry, this sounds very confusing Another reason I've become more concerned is that during this Early Bird Plus course we are doing, I'm recognising alot of my eldest daughter Luckily we have a really good relationship with the paed and ed psych here, and have seen them regularly for years and trust their judgement, so we know we can turn to them for advice. I don't think putting it off and dismissing it any longer will be beneficial. I've pushed it to the back of my mind for a few years now. I know my hubby is right when he says he's concerned about her starting secondary school.......she's bright as a button and to those at school just appears to be a model pupil but she's so naive and i cannot even imagine her being able to find her way round a big school without becoming distressed. Unless she's told absolutely clearly what to do or where to go, she panics. Also now she's 8, some of her friends are forming little cliques etc and talking about boys/fashion, but it goes completely over her head. She thinks they want to talk about pokemon .....and wants to discuss that with them all the time. I feel its just a matter of time before she finds herself excluded from these groups, and hubby's right, the older she gets the worse it will get for her. Not that it bothers her, she doesn't seem to mind if she has no one to play with someone is being mean........She even moved schools without a backward glance at her friends, whilst our son was in tears saying goodbye Will let you know how it goes with pead when we bring up our concerns, and thanks again jb.

 

Debs x

[yoyo]

.......she's bright as a button and to those at school just appears to be a model pupil but she's so naive and i cannot even imagine her being able to find her way round a big school without becoming distressed. Unless she's told absolutely clearly what to do or where to go, she panics. Also now she's 8, some of her friends are forming little cliques etc and talking about boys/fashion, but it goes completely over her head. She thinks they want to talk about pokemon .....and wants to discuss that with them all the time. I feel its just a matter of time before she finds herself excluded from these groups, and hubby's right, the older she gets the worse it will get for her. Not that it bothers her, she doesn't seem to mind if she has no one to play with someone is being mean........She even moved schools without a backward glance at her friends, whilst our son was in tears saying goodbye

 

Sorry about the above - I truly screwed up with replies!!. Debs, the above extract was me - academically VERY strong- photographic memory, top of class etc but so naive, and remain completely disinterested in fashion etc. My secondary years were hell as I realised I was so strange. However, I was so unhappily adopted adn abused by my mother that I thought my strangeness was due to her. It was only when I got married and thought my problems were over that I realised I was not geting better. I don't know whether it would have been easier to be diagnosed; I have simply spent my life trying to be normal and I have to say that I have largely succeeded. My work colleagues think I am normal, if a little highly strung under pressure; all they remark on is my mega strong focus, memory and ability to achieve. My husband and children know the exact truth - the phobias, anxiety, hatred of social situations and basic lack of trust in people. Discovering AS through meeting my natural father has simply provided an explanation for my behaviour - it's rather discouraging that I will not get better. I hope that your daughter does not suffer at school and I wish you well as you support her and help make things easier for her.

 

Best wishes,

Gill

[Bagpuss]

Gill thankyou again for replying. We have decided to definately get some advice from pead on our concerns. I was unsure when I started this thread, but am now convinced this has to be addressed. Appreciate you telling me of your experience,as it couldn't of been easy for you. Everyone who has taken the time to respond has helped us so much to make our minds up, and we feel so much clearer about it all now.

 

Debs x

[lisa]

She said she hadn't seen a child whose speech had developed so rapidly, and felt she was seeing a different little girl.

 

I'm quite surprised that a SALT would say this. It can often be a sign of high functioning autism or Aspergers when speech is delayed and then there's a rapid catch up. My son didn't speak until he was nearly 3, not a word, then one day he practically started speaking sentences, very clearly and by the time he started school I would say his speech was more advanced than most. He had quite an unusual choice of words, eg. telling his teacher, "you look very dashing today.." I've met quite a few parents at our local NAS support group whose kids have seemed to have this pattern of delayed speech and then sentences overnight.

 

Lisa

[Bullet]

Just wanted to say that I am very sure I have Aspergers myself and the way you are describing your dd also stikes a chord with me.

[Bagpuss]

Lisa, thanks for reply. She also apologised to us, and said she had felt that our daughter was possibly ASD when she had requested referral to Child Development Centre at 2. At that time she was non verbal and non compliant. When she saw her again, at around the age 4, she was shocked by the difference. Our daughter was now deemed to have speech & language within normal range for age and was quite happy, chatty and willing to be involved in assessment. She felt that she had caused us a traumatic 2 years by referring her in the first place. We only ever viewed it that she was only doing her job. I never had any reason to question what she said, and believed her when she said she hadn't witnessed such a rapid progression before. Our daughters speech developed similarly to your childs. It was as if she woke up one day and decided to communicate ....with words rather than screams .... Thanks again Lisa for your reply.

 

Bullet, thanks for your reply also. It seems that those who have responded do see a similarity between themselves/ their children and our daughter. As I said in previous post, we are going to seek advice now, and are much clearer . thanks again.

 

Debs x

[k9ruby]

Dyspraxia? Its very similar to As so might be worth a look...

[Bagpuss]

Hi All,

 

Just a quick update on whats happening. As you know I mentioned we were seeing your youngest daughters pead, which was today. We decided to definately talk to him about our eldest daughter possibly having Aspergers and ran thru with him all the little "quirky" things she does which we are concerned about and asked his opinion. He thinks we are right to be concerned and agrees that Aspergers is a possibility. He has asked us to go to our GP and ask for our daughter to be referred to him, which we are doing tomorrow. Not sure how I feel about it all now we've taken it one step further and who knows what the outcome will be, but will keep you all posted. Thanks again for replying. Really appreciate it so much, and it helped us make a decision.