Aspergers ruled out? Our story and advice/help please?

[devilot]

Hi everyone,

 

been lurking on these boards for quite a while but only just found the time and/or courage to post.

 

Our situation is this: I have an 8 year old DS who I have suspected of being on the ASD from him being around 18 months old, perhaps earlier. At the time I didn't have any clue of what might be wrong with him, just that he was 'different'. I have had a wide experience in bringing kids up, of different age ranges, and I knew that DS behaved differently.

 

A few of his 'symptoms': From being a baby when it came to birthday parties, he would get really upset with all the fuss, and even used to cry when we sang 'happy birthday'! (we have photos of him aged 2/3 blowing the candles out with tears streaming down his face!). He freaks out at loud noises has a phobia about EVERYTHING - from the dark, to heights, and produces over the top reactions to these fears, for example although he loves museums as he loves learning, if an exhibit is slightly dark he refuses to go any further around it. He has full on panic attacks. He struggles to get on with his peers and constantly feels persecuted and 'got at', my take on it is, they know what winds him up and do it more so which in turn leads to him getting more upset. He is forever falling out with his friends and has at least 3 new best friends a week. Despite this, he craves friendship and acceptance and is a pushover and very easily influenced.

 

He has since tiny made a 'humming' noise when he eats, he doesn't know he is doing it and can't stop. This was his only 'noise' up until a couple of years ago when it was joined by a 'snorting' sound, like him trying to clear snot from the back of his throat - this came after a heavy cold one day and has pretty much stayed.

 

He struggles with school and is on the Special Needs register - his main problem is that he panics if he is given a set amount of time to do something, he also struggles with his handwriting and to get his thoughts organised and onto paper. Despite this he has an excellent grasp of the English language and a huge vocabulary, as an example, a in a recent story, he wrote of '...the darkness crept from the corners'.

 

He has sleep disturbances (night terrors) and also wets the bed. The bedwetting has been curbed after hospital appointments and prescribed medication (Oxybutanin).

 

He seems to have highs and lows - and when he is low he gets really low, and speaks of 'hating this life' and wishing he wasn't here anymore. We have also had a few 'i'm running away' episodes, though he doesn't get much further than across the road!

 

There are other things but I think thats enough to be going on with!

 

Our problem is this: he has had a referral to the CAHMS team who passed us onto a child psychologist. After an initial consultation she is veering on the side of it NOT being Aspergers, due to him having a good imagination? She is unsure what is the problem and at our last appointment, mooted Dyspraxia (he does have poor gross motor skills) - looking this up, the symptoms are very similar to AS, but again the 'good imagination' would rule him out of that one as well? I fear that a Dx will not come because she is fixated that he can't have AS due to his imagination - does anyone here have an Aspie with a good imagination? I saw a bloke on Jeremy Kyle (yes, I know!) who was Aspergers and he enjoyed creative writing, so surely because DS can write a good story and likes to draw, doesn't automatically exclude AS, does it?

 

I will answer any further questions regarding DS' behaviours - any help or advice would be much appreciated. My biggest fear is that the psychologist appointments will come to an end (I think she said we can have up to 8 ) and DS will be dumped back in at the deep end, with no help or support.

 

Thanks in advance.

[witsend]

Hi Devilot and welcome <'> I certainly recognise quite a few things you've said about your lad as similar to mine (though he's 13 now). First I was not aware at all that imagination prevents a diagnosis of dysraxia at all! I'm sure that's not right my son was dx with dyspraxia around the age your son is now and imagination was never questiones re that. He went on to be dx after a long while with Aspergers and the imagination thing came up a few times and I did think it got in the way of dx for a while.

My son does have a very good imagination in some ways, he thinks of great plots for movies/stories etc and is actually quite creative. From my point of view and having spoken to others more knowledgeable about the subject, I'd say where the lack of imagination comes in is with his inability to forsee consequences of actions. When he was younger he jumped headfirst into the deep end of a swimming pool long before he'd learnt to swim!! etc etc, as he's got older he would be the one other kids got to play pranks etc at school becasue he went along with it quite willingly not seeing he would be the one to get in trouble, if you see what I mean?

My son also has always made and broken freindships rapidly and easily, he's a little better now he's older but still would love to have 'real' freinds - it's quite heartbreaking. He also has very low moods and has said stuff about hating his life and wanting to die this is really hard to hear though I have realised over the years much of the time he is just expressing he is upset in his own way!

You know your son better than the psychologist and you probably have a long way still to go 'til poss dx but fight your corner and don't let them turn you away if your not satisfied! I used to think everyone must know better than me but have found this often is not true!

You will get loads of help and advice here, take care, keep posting.

Luv Witsend.

Edited February 18, 2008 by witsend

[bid]

Hi Devilot, and welcome to the forum

 

This is one of my main bugbears!!

 

The 'imagination' element of the Autistic Triad of Impairments does not refer to 'creative imagination', as your DS' consultant appears to think. It is increasingly and more acurately described these days as a 'problem with flexible thinking'.

 

 

Have you read Tony Attwood's 'Asperger syndrome: a Guide for Parents and Professionals'??

 

This is an excellent introduction to AS, and the latest edition has not long been published.

 

good luck with getting the correct dx for your DS.

 

Bid

 

Have a look at this thread for more discussion about this very point:

 

http://www.asd-forum.org.uk/forum/index.php?showtopic=16074

Edited February 18, 2008 by bid

[Guest Lya of the Nox]

welcome

<'>

my dd has imagination

nothing like mine tho

but she has some

x

[Kinda]

For me the important question is is your son being given the help he requires, and will the diagnosis help with this if its not presently being given?

 

I'm trying to understand if the main issue is the fact that you are convinced he is AS or is it the help you want for him if he is diagnosed with AS?

 

The labels do help, allowing you to understand your son better by way of knowing how he views the world and how he behaves and reacts to certain situations. The label is also helps in educational terms to seek by allowing the correct assistance being given.

 

I don't think they can point to one aspect of your son's traits and then discount all the other traits that hit the mark. I think you need to obtain some written evidence (perhaps off the web, I know the Autistic Society are very good and if you ring them they will guide you to the correct info on their web). As to the vivid imagination seemingly being used by the ed psych to exclude your son from AS then you can use the evidence to get them to re-consider and use it to argue your case.

 

Perhaps the label in itself is not important but more that the label should enable you to get the correct help?

Edited February 18, 2008 by Kinda

[LizK]

In Aspergers the issue is with difficulties in social imagination which is a different concept to imagination. The third part of the triad of autism used to be difficulties with imagination but that has been changed difficulties with flexibilty of think of which social imagination is not but it's not an absolute. I too would recommend Tony Attwood 'The Complete Guide to Apsergers Syndrome' is his latest book and fantastic and contains information about imagination. if necessary quote it to your consultant!

 

Lx

[devilot]

I think the important issue for me is is your son being given the help he requires, and will the diagnosis help with this if its not presently being given?

 

I'm trying to see if its the fact that you are convinced he is AS or is it the help you want for him?

 

The labels do help, they help you to understand your son better by way of knowing how they view the world and the problems they have. The label is also necessary in educational terms to seek help that you need.

 

I don't think they can point to one aspect of your son's traits and then discount all the other traits that hit the mark. I think you need to obtain some written evidence (perhaps off the web and I know the Autism society are very good if you ring them they will guide you to the correct info on their web) as to the vivid imagination not excluding your son from AS and use this to argue your case with the psychologist and ask them to re-consider.

 

Perhaps the label is not important but more that the label should enable you to get the correct help?

 

Yes, the label is really only needed for purposes of getting the help he requires. I'm not sure the school will give him proper support without it. As I said he is under the SENCO but the help they give him is minimal.

 

Also DS knows he is 'different' and perhaps if he has a name he can research himself on the internet, it will stop him thinking he is 'crazy'. These are his feelings and I think explaining what is wrong might help him somewhat.

[JsMum]

I would request an assessment in Autism that specialises in Autism, National Autistic Society have further infomation on private assessments and I know that there is other specialist developmental centres you can access too for further advice and support, We visisted Bibic and they have supported us no end, there is other developmental centres across the country so please dont give up, your son sounds like he has a severe Sensory Intergration Issue, and I recommend further support for this, a brilliant book is The out of Syncs Child, in there is further support too.

 

Do not give up, keep going, you obvously havent met a specialist in Autism yet, they know that children with autism do have genrally a very fasinating creative imagination, there is some good websites on this and what many people are suggesting with imagination is theory of mind, which is why socialising is so difficult so look up this rather than imagination.

 

Have you been to any of the NAS help Programmes these are very informative too.

 

I would suggest that you also attend some of the parenting support groups aimed at ASDs especially the spercific Aspergers Syndrome parent support group as they will have more of the understanding of the higher functioning side of the ASDs.

 

Contact a family have further contact details of families who are going throw similair road and may put you intouch with other families as well as support services and further information on Aspergers Syndrome.

 

There is many myths of Autism and Aspergers Syndrome so it will be of no surprise that you have come across a psychologist suggesting that he cant because of his imagnination.

 

Google in Myths and facts of Autism and things will come up that will prove this to be so.

 

My son was too different from the age of 18 months, especially as he was expected to socialise within toddlergroups, day nursery ect.....

 

So continue to gather evidence and I would request further assessments at school too, start the process of the Statory Assessment for a statement too.

 

Good Luck dont give up and you have some understanding already what the reasons are behind your sons behaviour, in the early days I didnt and the concequence was that I using traditional partenting techneques that just simply didnt work due to his now understandable special needs.

 

JsMum

[JsMum]

Yes, the label is really only needed for purposes of getting the help he requires. I'm not sure the school will give him proper support without it. As I said he is under the SENCO but the help they give him is minimal.

 

 

A lable helps but it should not mean that the child doesnt get his needs met, if you identify his needs that in itself is enough for the school to meet his needs, Js ASD is confirmed but the LEA have not included in his statement, but his IEP is that of a child with a ASD he has specialist support for social skills and help for Dyslexia, but these are not diagnosed by the LEA but they are identified in his Statment and his IEP, under the special Educational Needs act it doesnt have to be diagnosed just someone has to raise the concerns, and then the needs met.

 

What does his IEP state, what are the targets? how many has he had that replicate the last IEP ect....

 

I would write to the LEA request an Assessment then all your concerns can be noted and pinned down, if they choose to ignore his needs just on the basis of a diagnosis then the school are not meeting his SENs.

 

A diagnosis does help but what about 16yr olds who are just diagnosed does that mean for the entire primary and secondary years there is no support? in some cases this happens but for many children with UNDIAGNOSED AS the key is to identify and achowledge the difficulties and get the school to meet these needs with or without a diagnosis.

 

 

 

JsMum

Edited February 18, 2008 by JsMum

[cmuir]

Hi

 

My son is 6 and has AS. Since he was 15 months old, it was obvious to anyone that something wasn't right. I was glued to my computer night after night and bought a mini library trying to work out what was wrong. I read lots and was fairly sure that it was AS, then I read two books, found this forum, and was certain it was AS. Our GP, HV and nursery manager were all in agreement that my son had behavioural problems, but completely dismissed AS (none of them had specific expertise or knowledge of ASDs). Problem was, that they were all lucky if they saw my son for 15/20 minutes - usually on a good day! I was living with this 24/7. It was through someone on this forum (she knows who she is - and I'll be eternally grateful!) that she gave me the name of a consultant whom she had nothing but praise for. Sure enough, after a further 2.5 years of battling, I finally saw this consultant (despite being passed from pillar to post and being told by Paeds, GP, HV, etc that it wasn't AS) and we got the diagnosis of AS. This consultant is someone who is very well respected within her field - she saw my son and said that whilst he wasn't a textbook classic case, they were lots of things that she saw that made her certain.

 

That was a very long-winded story! My point is that if your heart and your head tell you something, then stick with it. I'm not saying we parents know best and that qualifies us to self-diagnose, but I am saying that it's very easy for specialists to get the wrong impression, mis diagnose, whatever, when they only see a child for say 30 minutes on a good day. I haven't had pleasant dealings with CAMHS (I've been told to ignore the fact that my son self-harm, wraps shoelaces around his neck, says he wants to die, runs on road in front of cars, etc - all behaviours which need tackling to prevent serious injury or worse!) - I wouldn't dream of stereotyping CAMHS, but I am saying that diagnosing ASDs may not be specifically their area of expertise, etc.

 

One thing that helped me was to keep a diary (I kept one over 8 months) to document how my son behaved as parties, outings, etc (things like he wouldn't unwrap wrapped presents, insisted on walking same route to shops, had obsessessions, etc). I photocopied the most relevant parts and sent them in advance of appointments. When I was told 'your son doesn't have an ASD', I'd reel off numerous events and question why they were so sure.

 

Lastly, your comment about your son having a good imagination rings bells with me. Paeds, etc all said my son has a good imagination, but when the consultant saw him and after consultation with me, it was obvious R was simply reeling off events which he'd seen from his favourite tv programmes, dvds or had observed from other kids. He has several sessions with an OT, SALT, etc and it was obvious that whilst on the surface his language skills and imagination were good, that his reciprocal language wasn't good - he wasn't giving appropriate responses to questions, eye contact was variable (ranging from good to very poor, etc). All in all, R isn't classic AS (I've seen another little whom I would consider as much more obviously AS), but nevertheless, lots of things do still add up to AS.

 

Hang in there, and don't be fearful to question.

 

Regards

 

Caroline.

[westie]

My son has Pathological demand avoidance and he too seems to have good imagination, but he does not have flexibility of thought - i.e. can create imaginative scenarios but cannot incorporate others ideas into the scenario - causes problems when playing with other children his age, as he tells them what to say/ do etc. It took 3yrs of assessments at CDC and others before we found a diagnosis (was behaviour problems and although he has features of AS not enough for diagnosis)

 

My son was assessed and formally diagnosed by a centre in Nottingham who speciaise not just in PDA but in communication disorders in general (and have expertise in ASD's) so this may be worth a look if you want another opinion...

Not sure If I am allowed to put name so if you bothered pm me.

[Annea]

Hi Devilot,

 

<big hugs> When reading your story, it could also have been written about my eldest daughter who was diagnosed with A/S three years ago.

 

My daughter writes prolifically and also has a fantastic grasp of English language, when reading a story from her recently it was reminiscent of a scene from Jane eyre where she is describing some landscape.

 

The imagination thing stalled us for a while too! and to be honest I didn't know about what Bid and others have said about the different types of imagination < out to buy this book tomorrow>

 

I had my daughter diagnosed independently and believe wholeheartedly that if she had not got a diagnosis, then we would be a lot further behind than we are in sorting out her education etc.... It's also important to note that after diagnosis very few people get much help through CAHMS, or paeds etc... we have just been told.. not enough resources.. just get on with it! I am so glad we opted for diagnosis though. As others have suggested you need t find an expert in ASD's. They don't seem to be as abundant as one might think.

 

Good luck with your journey... I have found so much help here and have been given many a much needed hug within 'these walls'

 

Anne x

[Nic m]

Hi Devilot, i have been really busy of late and only managed a quick glance at the forum over the last week or so.

I echo what others have said. My lovely dd could give some wonderful stories to teachers but i would say her imagination is limited in many ways and very rigid.

Stick with it, keep calm in their presence and ask them questions.

Good luck

Nicola

[pookie170]

I'm another parent of an AS son who has a fantastic imagination-and this stymied CAMHS as to dx'ing him with AS too! However, I found the advice given here by members was invaluable, as I was able to go back to her with internet printouts and say 'Look, see, you CAN have an ASD and an imagination!!' They do seem to think that to have a condition (ASD,ADHD,OCD,etc) then you should pretty much fit into the diagnostic criteria. But my opinion is, that NT kids have huuuuge differences in their 'normal' behaviours, why would ASD kids be any different? No two people are the same- cripes, even people who suffer from the same types of illnesses have big variations in the symptoms they present with!

Again, my lad has also expressed a wish to die-and that imagination created some rather scary ideas of ways in which he thought could accomplish this! But this inability to forsee consequences played a big part, as did his (at that point) undiagnosed ADHD, and we have made progress since then.

I would definitely argue this point with CAMHS, as having an imagination does not rule out the possibility of an ASD at all. P'raps if you source a copy of the book Bid suggested, you could earmark any helpful parts and show this to them?

Best of luck!!

Esther x

[harmony]

Hi everyone,

 

been lurking on these boards for quite a while but only just found the time and/or courage to post.

 

Our situation is this: I have an 8 year old DS who I have suspected of being on the ASD from him being around 18 months old, perhaps earlier. At the time I didn't have any clue of what might be wrong with him, just that he was 'different'. I have had a wide experience in bringing kids up, of different age ranges, and I knew that DS behaved differently.

 

A few of his 'symptoms': From being a baby when it came to birthday parties, he would get really upset with all the fuss, and even used to cry when we sang 'happy birthday'! (we have photos of him aged 2/3 blowing the candles out with tears streaming down his face!). He freaks out at loud noises has a phobia about EVERYTHING - from the dark, to heights, and produces over the top reactions to these fears, for example although he loves museums as he loves learning, if an exhibit is slightly dark he refuses to go any further around it. He has full on panic attacks. He struggles to get on with his peers and constantly feels persecuted and 'got at', my take on it is, they know what winds him up and do it more so which in turn leads to him getting more upset. He is forever falling out with his friends and has at least 3 new best friends a week. Despite this, he craves friendship and acceptance and is a pushover and very easily influenced.

 

He has since tiny made a 'humming' noise when he eats, he doesn't know he is doing it and can't stop. This was his only 'noise' up until a couple of years ago when it was joined by a 'snorting' sound, like him trying to clear snot from the back of his throat - this came after a heavy cold one day and has pretty much stayed.

 

He struggles with school and is on the Special Needs register - his main problem is that he panics if he is given a set amount of time to do something, he also struggles with his handwriting and to get his thoughts organised and onto paper. Despite this he has an excellent grasp of the English language and a huge vocabulary, as an example, a in a recent story, he wrote of '...the darkness crept from the corners'.

 

He has sleep disturbances (night terrors) and also wets the bed. The bedwetting has been curbed after hospital appointments and prescribed medication (Oxybutanin).

 

He seems to have highs and lows - and when he is low he gets really low, and speaks of 'hating this life' and wishing he wasn't here anymore. We have also had a few 'i'm running away' episodes, though he doesn't get much further than across the road!

 

There are other things but I think thats enough to be going on with!

 

Our problem is this: he has had a referral to the CAHMS team who passed us onto a child psychologist. After an initial consultation she is veering on the side of it NOT being Aspergers, due to him having a good imagination? She is unsure what is the problem and at our last appointment, mooted Dyspraxia (he does have poor gross motor skills) - looking this up, the symptoms are very similar to AS, but again the 'good imagination' would rule him out of that one as well? I fear that a Dx will not come because she is fixated that he can't have AS due to his imagination - does anyone here have an Aspie with a good imagination? I saw a bloke on Jeremy Kyle (yes, I know!) who was Aspergers and he enjoyed creative writing, so surely because DS can write a good story and likes to draw, doesn't automatically exclude AS, does it?

 

I will answer any further questions regarding DS' behaviours - any help or advice would be much appreciated. My biggest fear is that the psychologist appointments will come to an end (I think she said we can have up to 8 ) and DS will be dumped back in at the deep end, with no help or support.

 

Thanks in advance.

 

 

 

 

My AS daughter has an amazing imagination. Her imaginary world is where she spends a great deal of her time, possibly because the real world is too scary/hard for her to deal with. Her imaginary friends are loyal and never tease her, and her dolls/soft toys are her comforts. She can be free in her imagination, whereas in real life she is clumsy, lonely, confused mixed up, never able to keep up with her peers, finds school hard, and can't organise her mind (she is 12) When she was 5 she was cute and quirky, now she is forever in trouble, and all the AS traits are begining to show themselves. Anyone who says AS people can't have a vivid imagination are I am affraid wrong (and that was said by our AS consultant)

 

Harmony