name that disorder

[NobbyNobbs]

i was wondering if anyone could tell me of the disorders that present as similar to HFA? i know attachment disorder gives some of the same behaviours, but wondered if theres anything else any of your kids have been diagnosed with before ASD was established.

 

the behaviours are (in a 3 yr old)

flapping when excited. if building a tower, has to stop, get up and flap every time they put a brick down

massive vocabulary with no understanding of answering/asking questions and communicating only with fixed statements ie 'my cup is empty' to mean can i have a drink

incredible intelligence (repeated knowledge and memory), but unable to learn basic concepts such as 'if you swing on the door it will hurt you'

high level of frustration/anger

inability to interract with children of their own age, with an ability to interract with older children through dominating 'rough' play only

confusion over emotion - cannot understand that just because you're not smiling it doesn't mean you're not happy

constant repetitive chatter to anyone and anything (has been caught talking to the toilet rim block!)

inability to understand that animals aren't people (expects the chickens to throw back a ball thrown at them)

good imaginative play based on repeated action (pretending to be a chef will ask 'what do you want for dinner?' to the same person repeatedly, and no matter what you say will answer 'we only have biscuits')

obsessive interests (has memorised and recites every road sign on our usual journey)

good enough eye contact

seeks attention but doesn't know when to stop/can only do this in fixed ways (reciting knowledge, taking your hand and dragging you)

 

i'm trying to establish what the issue could be and today 3 different people have told me shes 'very autistic'! obviously i know about AS, and to a lesser degree HFA and severe autism, but i know there are other things in the same areas and wondered if someone with more knowledge could fill me in

[Karen A]

Hi.Reads very like Ben at age three.As you probably know a lot already I will not repeat it all.

Possible explanations in order....

High intelligence and lots of adult interaction plus a bit of an attitude .[age three.we lived with a single friend at the time and so Ben had lots of input from three involved adults hence the advanced vocabulary and expectation that people would listen.Difficulties with peers put down to high intelligence and lack of interest in peers activities]Children with very high intelligence who do not have a peer group who understand them and who are not well supported in school can look very like AS.I once compared the characteristics of a child with AS with those of a child with high intelligence who was isolated and unsupported at school and there was little difference.Perhaps eye contact would be the main issue however even eye contact is not as clear as it might be....some professionals consider that Ben can make eye contact.Children who are very intelligent can be come challenging because they are frustrated at not being understood.

 

Dyspraxia and high intelligence .[Children with dyspraxia often have some social diificulties but less so than if they had AS] [age 7]

Dyspraxia and some difficulties related to my parental mental ill health in the first three years of Ben's life [attachment disorder ]. [age 8 ]

In theory with attachment disorder social difficulties should be helped by psychotherapy so that a diagnosis of AS could be ruled out.In practice Ben made progress in psychotherapy but still has AS.

 

AS diagnosed last year.[age 10].

 

I would have said that the main issue regarding whether a child has AS would be that with other possible explanations if environmental issues were addressed then the difficulties would no longer be present.So a child that was intelligent and frustrated would become more settled if the school setting was changed.Unfortunately I no longer think things are that straightforward.

Ben is now much better supported than he ever was in primary school.Although he obviously still has AS when things are going well many people would not believe it.

 

 

 

One story that might interest you.

At around the time Ben was at nursery I also got to know another boy who also went to nursery.I was a lunchtime supervisor at the nursery so knew the children pretty well.

I spent over a year convinced that Ben could not have AS.He was just like the other boy.The other boy was obviously very intelligent and had very involved parents.The parents had never raised the possibility of AS.The nursery was an excellent nursery and staff were convinced that both boys were bright lads who liked to talk to adults because they were not intersted in their peers games.

Any way wind on several years during which time I had not seen the boy or his parents.Last month I attended an NAS course.I walked into the room and there was the boys mum who also now has a son with AS.I started to say that I was surprised but then had to admit that actually I wasn't.

 

Hope that that has made things clearer but expect not.

In Ben's case the professionals still do not agree.

[justine1]

The things you listed sound exactly like my 6 yr old(AS) I must say I did search online before I took him to the Gp,and what I thought it was ADHD,or rather ADD,without the hyperactivity.When I went to the GP she could see straight away it was not the case.My 3 yr old is also possible AS,he has not got any of the things you mention on your list but has many of the things other people have mentioned with regards to their AS kids:

Fussy eating

Only eating with certain crockery and cutlery

Hates dirt,gets upset when house is not vaccumed,and does not like messy play

He talks to kids at preschool but only on Ben 10 doesnt play much at home or school seems to lie down on the floor alot and under the tables.

He has poor communication,spits alot when he talks,most people dont understand him

He will sing the same song every minute of the day for 2-3 days

He does alot of imaginative play with lots of sound effects as opposed to talking(my AS son did not do that)

 

Anyway not to make the list to long,of course the best thing is to see your GP.My sons preschool is not very helpful at all,I have gained most info on his school behaviour from my eldest son as his playground is next to the preschool playground.So really need to seek advice soon before he starts school and needs help.Good luck.

[NobbyNobbs]

thanks for the help!

 

after having one foster child with ASD who was refused diagnosis because she had attachment disorder i want to get on top of this.

 

she's seeing the child development team next week, which is why we were talking about it today. her nursery, an ASD support worker and another knowledgable person all said about the ASD today. before that i had been aware that a lot of her behaviours were like that, but they often are with kids in her situation and shes so chatty i ruled it out.

she is under the inclusion team at nursery because she has so much trouble there, and is so much trouble there. i have also considered ADHD because she is very impulsive, can't sit still, doesn't listen (or understand is more likely) doesn't retain information etc. but then she is 3 and 3 year olds are a funny bunch in general!

 

our biggest problem will be the attachment disorder issue, but the fact that she has things like flapping and speech issues suggests to me its not attachment (or could be both). if it is attachment disorder there is something else as well because attachment disorder doesn't cover all her issues.

 

funny how we keep getting foster kids like this. makes me wonder if there is a massive population of undiagnosed ASD foster kids! (we've had plenty who are most definitely NT too)

[julie1]

my son was diagnoised with semantic and pragmatic language disorder before he was diagnoised with autism.

[Sally44]

It sounds like they're on the spectrum. And without assessements it is hard to say whereabouts. Also children develop. So although I can see aspects of my own son in the post, I know that he is not like that now. So you just don't know how they will develop.

It also sounds like a speech disorder with alot of set rote learnt phrases being learnt and also rote learnt play ie. repeating scenarios she has seen accompanied by the words associated with them. That is not imaginative play. That is repeating what has already been seen accompanied by the words. That is echolalia and delayed echolalia. This was how my son played. It isn't using imagination because if you try to change the repeitive game or the words that have to be said then they will get upset. But my son's play has developed from this. Firstly he started to join together two different scenarios eg. characters from star wars with characters from transformers. Then he started to bring in new dialogue or scenarios. So that now I can tell when he is replaying something already seen and if I ask him 'where have you seen that', he can tell me the TV programme. At other times I can see that it is totally made up and new.

 

They are also using set phrases to communicate ie. 'my cup is empty' to mean I want a drink. Can they use pronouns such as I, me, you, she, he, they, us etc or does she use sentences that avoid them, or do they mix them up?

Also giving totally unrelated answers to questions means there is probably a speech disorder. For example I remember reading a book to my son and asking him the question 'what is the man doing' and my son answered 'its a blue car', which was nothing to do with what the man was doing. That used to happen alot. He didn't know the answers or the words to give the answers, yet he knew it was his turn to speak and therefore said something. It can indicate - as you have said - speech without meaning - but also difficulties with word/language retrieval. So the words or meaning may or may not be there, but they cannot be accessed and retrieved.

Flapping inbetween activities may mean they need to pep themselves up to do a task. For example, if my son is doing his homework he stops and goes and does 3 or 4 bounces on the trampette and then returns to his work. The OT said he needs to do this to get himself together to continue with the task. Children like this need lots of breaks in school and to be given something physical to do eg. push on a wall, pull on a piece of rope, walk with some heavy books on their head etc.

[NobbyNobbs]

i would say she defintiely has echolalia, as she repeats all sorts of things with no way to understand what they are, but since this is probably how her speech was deveoped rather than with reciprocal encouragement its hard to know whether its just a habit. she gets her pronouns muddled up, she'll say 'we' referring to only herself, and him when she means her. she also muddles in/on/under. she has funny speech recall, she'll say 'there are farms on the roof' when it is birds on the roof, and she also uses nonsense phrases to buy time to come up with a response. she has now also taken to making clicking noises when she is thinking of things to say. she'll walk up to you, and click click click and then say whatever.

she has an incredible memory and is obsessive. in the first week of the summer holidays she had a magazine and a character called burping herbet was missing in a quiz. we had to throw the magazine out after 3 days because she was telling us this at least 40 times a day. she will still come up to me and tell me that burping herbet was missing now, and its been months!

 

the flapping seems to be linked to excitement. she does it when excited, and everytime she does something she thinks is good (like stacking a brick) she has to do it. it means she doesn't get very far with playing because it takes her so long to get up and flap each time. she does have as far as i can tell genuine imaginative play as well as the repeated play. she has a toy house and will play with little figures, talking and pretending they're doing things.

 

i think the main things are the speech/communication, and her inability to learn certain things. a friends little boy is 17 months and the other day he was with us and being completely non-verbal still managed to tell us that he wanted to eat by climbing up onto a chair at the table and smacking his lips. that really made us realise how bad her communication is. her terrible social skills could be down to upbringing, but after 6 months theres been no improvement in play with children her own age, although she does hit the kids slightly less often .

[JsMum]

 

 

communication/language disorder

ADHD

Dyslexia

Gifted and Talented which would cancel out Autism.

Aspergers Syndrome

 

I would have her speech defo assessed as well as her intelligence too.

 

Educational Psychologist LEA suggested J had Attatchment Disorder but this was ruled out and recently been dx with ASD/HFA, as well as other developmental disorders and Dyslexia.

 

Its very probable she has what is considered the Mix where they have a number of developmental disorders.

 

JsMumxxx

 

 

[trekster]

communication/language disorder

ADHD

Dyslexia

Gifted and Talented which would cancel out Autism.

i think Stephen Wiltshire would disagree with you there.

Aspergers Syndrome

 

I would have her speech defo assessed as well as her intelligence too.

 

Educational Psychologist LEA suggested J had Attachment Disorder but this was ruled out and recently been dx with ASD/HFA, as well as other developmental disorders and Dyslexia.

 

Its very probable she has what is considered the Mix where they have a number of developmental disorders.

 

JsMumxxx

 

i was also thinking adhd/dyslexia sometimes one can seem like the other.

 

[Sally44]

I think if you make a note of all her speech differences along with the behaviours then it is going to be very useful.

I was also specifically asked if my son used an incorrect word to replace the correct one eg. as your example 'there are farms on the roof' to mean 'birds'.

My son also made up words for things if he could not remember the right word. Sometimes these were very simple words. I remember he had made up names for all the family at one point.

Making the clicking noises before she speaks maybe her way of helping her concentrate on what she wants to say. My son now repeats the last sylabell of the sentence whilst he gathers his thoughts for the next sentence. We believe he does this to help him stay on track with the conversation. So he might ask 'are we going out today, ay, ay, ay ..... because if we do I want to go on the bus, us, us. etc

 

She is also showing signs of perseverant speech - google that. My feeling is that that is used as a way of communicating when they cannot do it a more 'conventional' way. And if the child is finding that many things are not making sense, or they cannot connect information for it to make sense to them, then they can rely on perseverant speech because it gives them a predictable answer. So it maybe reassuring for them to keep asking the same question and getting the same answer.

[Karen A]

thanks for the help!

 

after having one foster child with ASD who was refused diagnosis because she had attachment disorder i want to get on top of this.

 

she's seeing the child development team next week, which is why we were talking about it today. her nursery, an ASD support worker and another knowledgable person all said about the ASD today. before that i had been aware that a lot of her behaviours were like that, but they often are with kids in her situation and shes so chatty i ruled it out.

she is under the inclusion team at nursery because she has so much trouble there, and is so much trouble there. i have also considered ADHD because she is very impulsive, can't sit still, doesn't listen (or understand is more likely) doesn't retain information etc. but then she is 3 and 3 year olds are a funny bunch in general!

 

our biggest problem will be the attachment disorder issue, but the fact that she has things like flapping and speech issues suggests to me its not attachment (or could be both). if it is attachment disorder there is something else as well because attachment disorder doesn't cover all her issues.

 

funny how we keep getting foster kids like this. makes me wonder if there is a massive population of undiagnosed ASD foster kids! (we've had plenty who are most definitely NT too)

 

Hi.

I researched the issue of attachment disorder and AS due to our own experiences.I do not know whether you are aware that attachment disorder and AS is one combination that is not allowed within diagnostic criteria.A professional would need to decide whether the behaviour they were seeing is due to AS or attachment disorder.

 

Differential Diagnosis:

 

Some disorders have similar symptoms. The clinician, therefore, in his diagnostic attempt has to differentiate against the following disorders which need to be ruled out to establish a precise diagnosis.

 

Age-appropriate Behaviors in Active Children.

Mental Retardation.

Under Stimulating Environments.

Oppositional Behavior.

Another Mental Disorder.

Pervasive Developmental Disorder.

Psychotic Disorder.

Other Substance-Related Disorder Not Otherwise Specified.

Taken from DSM 4 diagnostic criteria for AS.

 

 

 

As you probably have gathered I was very mentally unwell in the first three years of Ben's life.I probably would have been diagnosed with PTSD if I had been assessed at that time.I witnessed a seriously traumatic event when I was nine in my own home.When I was in my thirtees and married with two boys my past cought up with me.I was very anxious and controlling and my husband struggled to cope.When Ben was assessed by CAMHS we were honest about my mental health difficulties.CAMHS did very much then work on the basis that Ben's difficulties were much more likely to be related to something like attachment disorder.I think our case was probably unusual.When I researched attachment disorder nearly all of the information relates to children who have been fostered or adopted at some stage.

 

Usually when professionals do assessments for possible ASD they are able to exclude attachment disorder very easily.They are given a life history of a child who is exhibiting autistic features [don't like the phrase but best I can do] and find that there is no evidence within the history of events that could have caused attachment disorder.Hence they can rule out attachment disorder very quickly at the first appointment.

Unfortunately where a child has a history that could indicate attachment disorder as Ben did and as might be the case in your situation things become much more complicated.

Some CAMHS professionals including psychotherapists and some child psychiatrists are far more likely to believe that attachment disorder might be an issue rather than ASD becuase of their professional training.We have an excellent relationship with the psychotherapists that support us and have done for three years.However even though Ben was eventually shown to have AS after they suggested the 3di to prove he hadn't they still do not really believe the results.

 

Another issue is that the diagnosis of a child with AS requires an early developmental history.This is obviously difficult where a child is fostered unless there are very good records or a parent is willing and able to provide information.

In my own case I would never be able to be offered a diagnostic assessment for AS becuase the only people who would provide the information are no longer alive and my complex history makes assessment impossible.

 

I thought this information might be helpful.I think you might be facing an up hill struggle in hoping that some professionals will diagnose ASD if there is the possibility of attachment disorder especially where a child is fostered.

 

I was wondering how you hope the AS diagnosis might help.

We were in the situation where Ben did obtain support from ASD outreach because a SALT did not agree with CAMHS and thought Ben did have AS.However Ben has recieved three years of weekly psychotherapy.We have also recieved weekly psychotherapy and will have been in therapy three and a half years when we finish next Easter.

I have never come across anyone on the Forum who has obtained anywhere near this level of input.Although Ben still has AS which is not what we hoped when we started in therapy both Ben and ourselves have gained hugely from the input.At times it has been desperately painful however I think that is mainly because we were Ben's parents.I would expect that a foster carer would not have to deal with the complex issues raised by having a child with trauma due to parental experiences.

What I am attempting to say is I wonder whether you might not obtain more support for a foster child with attachment disorder rather than a foster child with AS

 

If I am really honest for me the AS diagnosis for Ben has helped me to move on.I had never forgiven myself because my child was thought to have attachment disorder because of me.However it has not made a huge difference to Ben.

I know that in some areas CAMHS professionals believe that children with AS have AS and little in the way of input can be done to improve the situation so no input is offered whereas children with attachment disorder can progress so support may be more likely to be offered.

 

When Ben was first seen by a very experienced CAMHS psychiatrist she questioned whether Ben might have attachment disorder.Due to her thoughts we have recieved some excellent input.If Ben had been diagnosed as having AS in most parts of the country we would have recieved minimal support.

I obviously do not know about the individual situation or your local provision.However if I were in your situation and the support was available for foster children and foster carers where a child had attachment disorder I would not worry too much about the AS diagnosis.When I read up on the topic which I did in great depth most of the stategies and approaches used for attachment disorder were just about the same as those for AS anyway.One of the books about support for pupils with attachment disorder even recommended the approaches used for children with AS.

Edited November 13, 2009 by Karen A

[Mumble]

Gifted and Talented which would cancel out Autism.

 

No, very possible for an individual to have Autism/other learning/physical difficulties and also to achieve highly in a specific or a range of areas. It is referred to as dual exceptionality. It is the assumption many have that individuals cannot fall into both categories that means a number of individuals suffer because both sets of their needs are not met. They are assumed to have learning difficulties etc and so intellectually are not catered for or are able to mask their difficulties intellectually and so receive no support for either.

[Karen A]

 

No, very possible for an individual to have Autism/other learning/physical difficulties and also to achieve highly in a specific or a range of areas. It is referred to as dual exceptionality. It is the assumption many have that individuals cannot fall into both categories that means a number of individuals suffer because both sets of their needs are not met. They are assumed to have learning difficulties etc and so intellectually are not catered for or are able to mask their difficulties intellectually and so receive no support for either.

 

Thanks for that Mumble.I was going to say a similar thing.Ben is 11 and has AS.He has just been given a level 6C in history.

I am sure Ben is on both the SEN and gifted and tallented register.He is certainly more intelligent than me.

 

 

[NobbyNobbs]

i was hoping any diagnosis would help because at the moment she is not doing well at nursery, refuses to play with most of the children, is violent towards them and if she were to start school tomorrow would probably be excluded within the first week. she clearly needs some sort of support/intervention if she is ever going to manage at school in september.

 

she is incredibly intelligent, its hard to get a true picture of how much so as she has learnt everything herself, but even so she knows far more than any other kid her age i've met. i think this is part of the reason she is so violent and disobedient (shes not disobedient with us, but everyone else struggles with her). she gets so angry when you dont listen to her, and so frustrated when shes not being stimulated that she just lashes out.

 

she will also be a walking target for bullies if we can't get the flapping under control, and if they call her names etc she'll just punch them! i suppose that could work both ways, they'll only pick on her once.

[JsMum]

 

No, very possible for an individual to have Autism/other learning/physical difficulties and also to achieve highly in a specific or a range of areas. It is referred to as dual exceptionality. It is the assumption many have that individuals cannot fall into both categories that means a number of individuals suffer because both sets of their needs are not met. They are assumed to have learning difficulties etc and so intellectually are not catered for or are able to mask their difficulties intellectually and so receive no support for either.

 

 

The only reason our LA did not DX J with Autism is because he has an Average to High IQ, the reason they could not DX J with Aspergers Syndrome is because J has Significant speech and Language difficulties, the LEA wouldnt DX High Functioning Autism as they said they dont DX HFA in their LA, its only recently since been in a specialist school has he been dx as ASD/HFA J is Level 1 for some subject while other subjects he is level 5/6 could even be more in science.

 

The information from NAS for Autism it is an IQ of lower than 70.

 

JsMumxxx

 

 

 

[Karen A]

The only reason our LA did not DX J with Autism is because he has an Average to High IQ, the reason they could not DX J with Aspergers Syndrome is because J has Significant speech and Language difficulties, the LEA wouldnt DX High Functioning Autism as they said they dont DX HFA in their LA, its only recently since been in a specialist school has he been dx as ASD/HFA J is Level 1 for some subject while other subjects he is level 5/6 could even be more in science.

 

The information from NAS for Autism it is an IQ of lower than 70.

 

JsMumxxx

 

Hi.I think the difference can be explained by terminology.

A very high IQ is perfectly possible in ASD which includes Asperger's syndrome.

It is likely that with an average or above average IQ the diagnosis given would be Asperger's Syndrome rather than HFA.However AS is still autism if I wanted to be difficult.

I am surprised that a LA can claim to be able to diagnose anything.It is usually recognised that only a medical professional can diagnose anything and medical professionals are usually employed within the NHS.

LAs that limit medical diagnosis in order to manage in the current financial climate.....well times are tough.

 

[Mumble]

A very high IQ is perfectly possible in ASD which includes Asperger's syndrome.

It is likely that with an average or above average IQ the diagnosis given would be Asperger's Syndrome rather than HFA.However AS is still autism if I wanted to be difficult.

AS and HFA are both autism. In fact you have to have an average or above average IQ for a dx of either (average simply being statistically, i.e. within 2 s.d. of the mean, so above 70). The difference between HFA and AS is only in speech/language delay as a child (but even this is difficult terminology wise as it doesn't necessarily just mean delayed talking - in fact you can 'speak' early and have speech delay/difficulties due to issues with speech/language: echolalia, pronoun reversal, inconsistent use of tenses, literal language interpretation, etc.) Post adolescence, HFA and AS present pretty much identically. However, with either dx, the individual is still autistic.

 

[JsMum]

AS and HFA are both autism. In fact you have to have an average or above average IQ for a dx of either (average simply being statistically, i.e. within 2 s.d. of the mean, so above 70). The difference between HFA and AS is only in speech/language delay as a child (but even this is difficult terminology wise as it doesn't necessarily just mean delayed talking - in fact you can 'speak' early and have speech delay/difficulties due to issues with speech/language: echolalia, pronoun reversal, inconsistent use of tenses, literal language interpretation, etc.) Post adolescence, HFA and AS present pretty much identically. However, with either dx, the individual is still autistic.

 

 

All I know is that J is defo on the Autistic Spectrum but the social and communication panel would not diagnose J, this was at the same time I was fighting for the specialist residential school as well.

 

Even though all his assessments and evaluations passed for Autism both by the Social and Communicational Panel and private assessments but because he is cognitivly functioning and he has Language disorders the Social Communication Panel would not commit to either AS or Autism even though we had there own evidence he had.

 

So yes I put this down to cost cutting stratagy dont dx either, Autism or AS even though there is evidence from both parties that Autistic Spectrum Disorder is obvous.

 

Js Mumxxxx

 

 

[JsMum]

i was hoping any diagnosis would help because at the moment she is not doing well at nursery, refuses to play with most of the children, is violent towards them and if she were to start school tomorrow would probably be excluded within the first week. she clearly needs some sort of support/intervention if she is ever going to manage at school in september.

 

she is incredibly intelligent, its hard to get a true picture of how much so as she has learnt everything herself, but even so she knows far more than any other kid her age i've met. i think this is part of the reason she is so violent and disobedient (shes not disobedient with us, but everyone else struggles with her). she gets so angry when you dont listen to her, and so frustrated when shes not being stimulated that she just lashes out.

 

she will also be a walking target for bullies if we can't get the flapping under control, and if they call her names etc she'll just punch them! i suppose that could work both ways, they'll only pick on her once.

 

 

There is also hyperlexia too like the girl in Matilda.

 

Her behaviour is most probably frustration down to inability to express herself and instead reacts physically.

 

In Js interaction it is all physical, with as little communication as possible, and mimiced by films.

 

His aggression if he looses it very bad hence kids in mainstream targeted him purely for his reaction so the fact she can punch when provoct may well back fire on her and in school she is only four others will be bigger, stronger and more socialy functioning that will then place her in a very vulnerable situation.

 

The teacher may well only see her reaction and not the other childrens provicating behaviour, and punish your child rather than punish the child who started it in the first place.

 

The importance for school is support for social interaction ect.......

 

I read many books on Attatchment Disorder too and many children may actually of ended up in care because a parent may of not been able to cope with thier behaviour because of an undiagnosed condition and so it may well be that it is actually not AD at all but an ASD.

 

Once in CARE as well the LA have more strings to pull to ensure a ASD isnt dx as they know the cost implications is higher than a AD child and a AD child can be admitted more easily in a mainstream school or a EBD school than a ASD child can.

 

Our LEA EBD school caters for AD children but it does not cater for ASD children.

 

From the research I did for AD and ASD the stratagies couldnt be farer apart, the stratagies for AD do not work for ASD at all, so my information is different to what maybe some have read here.

 

If it is possible that the AD is incorrect and the likelyhood she is more ASD then I would do everything I could to remove the AD and have ASD written down, AD does not bring more resources or therapies but more like behaviour programmes that would be totally inapropriate for a child with ASD.

 

JsMumxxxx

Edited November 13, 2009 by JsMum

[JsMum]

 

 

Found this throw NAS website.

 

But the symptoms are interesting, see what you think.

 

http://www.hyperlexia.org/hyperlexia.html

 

JsMumxxx

 

[NobbyNobbs]

hyperlexia would fit. i played wii resort for the first time today. i was playing golf and after saying once that i got a bogey when it flashed up and once that i got a birdie to my mom K could then tell me each time whether i had got a bogey or birdie. she also sees signs in shop windows etc and will suddenly say 'thats X' and is almost always right.

 

the only problem is they say they've only recoded it in males, although they have heard of a few females with it.

Edited November 13, 2009 by NobbyNobbs

[JsMum]

 

 

Im sure when AS was first DX it was mainly males, it maybe that there just isnt many girls been dx because other disorders are been dx and so girls with AS/Hyperlexia go undx for a lot longer than a male would.

 

Just my opinion.

 

Just because she is a girl though doesnt cancel out Hyperlexia, the list is intesting though isnt it.

 

Me personally a lot of the symptoms in AD are also symptoms for Autism/ASD.

 

Her oppositional could be more an aviodant behaviour because things become very stressed for her, also did wonder how sensory she was, Sensory Intregration and processing Disorder is also a massive trigger for children with similair behaviours to AD symptoms.

 

So you see name that disorder it basically could be a combination of some of them or many of them with your child.

 

JsMumx

 

 

[teachermum1]

J is gifted in many areas and probably has a very high IQ (if he was testable). His reading age is 6 years above his actual age and his computer skills are beyond those of most adults.

 

His dx is autism. He scored virtually full marks on his ADOS test i.e. very severe. There is NOTHING in the official DSM-IV or ICD-10 diagnostic criteria about high intelligence precluding an autism dx!

[darky]

hyperlexia would fit. i played wii resort for the first time today. i was playing golf and after saying once that i got a bogey when it flashed up and once that i got a birdie to my mom K could then tell me each time whether i had got a bogey or birdie. she also sees signs in shop windows etc and will suddenly say 'thats X' and is almost always right.

 

the only problem is they say they've only recoded it in males, although they have heard of a few females with it.

 

That characteristic sounds very much like my eldest son at that age. There were always concerns regarding his developmental progress, but acedemically he was always bright, so produced nothing but red herrings. (in grammar school now) It wasn't until he was 12 that finally we managed to get him assessed, he was diagnosed with Dyspraxia, and whilst he had characteristics of an ASD, they concluded there were not enough to dx him with ASD. One thing that stood out like a sore thumb was his reading age, which was assessed at 18, but his comprehension was 10 or something. Can't remember exactly, but it was a lot lower than his reading age. His senior school disagreed with the diagnosis though, which I was surprised. This is what they wrote:

 

I was rather puzzled by the negative diagnosis for Aspergers, as the individual reports seemed to identify so many diagnostic features, and there was little evidence regarding the alleged normal social interaction aspect other than G's own views. I suspect that one factor in the decision is that fact that G is not presenting a problem behaviourally, and because he is so bright he is developing some of his own strategies to compensate for his difficulties which skews the scoring on the questionaires.

My guidance to teaching staff will still indicate that G has many of the attributes associated with Asperger syndrome, and I will continue to get the Educational Psychologist to work with him regarding anger management so the absence of a formal diagnosis will have no impact on the support we give him.

 

It's always difficult when a child is so young. It's also difficult when a child is bright, because even with all the reseach and diagnosis teqniques, it seems to produce a lot of problems if a child is bright, and/or does not demonstrate behaviour difficulties. If a child is bright with behaviour difficulties, at such a young age, in my experience, has delayed things further, because there seems to be a tendancy to asume the behaviour difficulties are due to being bright, and certainly with our case, with all of my children, they have wanted to wait to see if they mature and settle down.

 

It was a long road for all my children's diagnosis. My youngest at the age of three was first seen, and deemed normal but naughty. She got a dx of PDD-NOS, ADHD and Dyspraxia at 6yrs old after years of hell. My youngest son was placid, presented with no behaviour problems in school, but was dx with Asperger Syndrome and Dyslexia, and Anxiety disorder at the age of 11. His IQ was assessed at 72, and was at least 4 years behind at school, but not one of his difficulties were picked up at school at all. Then my eldest son, un dx til he was 12.

 

Good luck with it all. It is a long road, but you know your child best. I always say to parents, go with your gut instincts, they are not often wrong. <'>

[call me jaded]

i was hoping any diagnosis would help because at the moment she is not doing well at nursery, refuses to play with most of the children, is violent towards them and if she were to start school tomorrow would probably be excluded within the first week. she clearly needs some sort of support/intervention if she is ever going to manage at school in september.

 

she is incredibly intelligent, its hard to get a true picture of how much so as she has learnt everything herself, but even so she knows far more than any other kid her age i've met. i think this is part of the reason she is so violent and disobedient (shes not disobedient with us, but everyone else struggles with her). she gets so angry when you dont listen to her, and so frustrated when shes not being stimulated that she just lashes out.

 

she will also be a walking target for bullies if we can't get the flapping under control, and if they call her names etc she'll just punch them! i suppose that could work both ways, they'll only pick on her once.

 

Have you got the area Senco involved? Or the early support/intervention team? Until they get to grips with challenging behaviour they won't really be able to tell what's underneath.

 

[Sally44]

I also wanted to reiterate that Hyperlexia can mean the child can read, but the understanding of the meaning is not there. That would also tie up with the other language characteristics the child is showing.

There are a number of less known diagnosis such as hyperlexia, non-verbal learning disorder, semantic pragmatic speech disorder that although they can be a separate diagnosis in some countries, it is actually considered that they are all on the autistic spectrum.

But for this child, if their language is as disordered as suggested, that would rule out a diagnosis of Aspergers. So a diagnosis of ASD with other specific aspects mentioned as well if relevent eg. hyperlexia, disordered speech etc. And it could be that literacy is her 'island' of cognitive ability where she does very well.

 

I watched a programme last week on Horizon called 'how to we talk', or 'why do we talk', and there was a man with autism who knows around 39 languages and is self taught. He has never been to language classes. He can pick up a new language within weeks, and can skip across the languages and translate words with so much ease. He can read newspapers in all those languages. It was amazing to watch and hear him. Yet he lives in a home as he is not living independently. I presume he would be considered to have hyperlexia. And again I would have thought that there is a scale ie. at some point someone will be so good at reading/writing that they are said to have hyperlexia, right to the other extreme where they are sheer genius at words/language etc with many falling somewhere inbetween.

[Mumble]

that would rule out a diagnosis of Aspergers. So a diagnosis of ASD with other specific aspects mentioned as well if relevent eg. hyperlexia, disordered speech etc.

Aspergers is an ASD.

[Sally44]

Aspergers is an ASD.

 

Yes I know. But if there is a language disorder or difficulties then that rules out Aspergers and therefore a diagnosis of an ASD is usually given, unless the child is severely affected and then a diagnosis of autism is given. And they (Aspergers, ASD, Kanners autism etc) all fall within the umbrella of an ASD. But I canot think of any other way of wording it, because if Aspergers is ruled out, then the next diagnosis if ASD. Would it help to say ASD excluding Aspergers?

[Mumble]

Would it help to say ASD excluding Aspergers?

I don't know what the question is, I've lost track of the thread

 

However, my position would be that we have far too many separate diagnoses and that this causes confusion. We would be better off (in my opinion) with one dx - autism.

 

Having lots of labels simplifies the individual too much and doesn't actually give people working with them the information they need to help them specifically. You need (in my opinion) the basic 'category' and then individual assessment and guidance based on that assessment that looks at the individual rather than making use of multiple diagnostic criteria and trying to fit the individual to preconceived ways of being.

[JsMum]

I don't know what the question is, I've lost track of the thread

 

However, my position would be that we have far too many separate diagnoses and that this causes confusion. We would be better off (in my opinion) with one dx - autism.

 

Having lots of labels simplifies the individual too much and doesn't actually give people working with them the information they need to help them specifically. You need (in my opinion) the basic 'category' and then individual assessment and guidance based on that assessment that looks at the individual rather than making use of multiple diagnostic criteria and trying to fit the individual to preconceived ways of being.

 

 

It would be helpful if assessments of Autism could be made independantly by specialist in Autism in the first place and not have LA set up social communication panels who INSIST on breaking down the ASD/ASPERGERS/AUTISM/ADHD/ODD down, it is actually the system that has given J so many Alphabetic letters throw diverting away from AUTISM in the first place.

 

J has many Aspergers Syndrome Traits but he has not got that due to his significant speech and language disorder.

 

J has additional Anxiety Disorder due to his Autistic Spectrum Disorder going undiagnosed for too long that they didnt understand his triggers and only saw the panic, fear, total aviodant behaviour, they also dx ODD because they say he was Oppositional and defiant.

 

So you see the system gives these kids the seperate diagnosis in the first place to try and delay a dx of Autism in the first place because of the overall effect of the public purse.

 

Js first DX was Speech and language delay, then Expressive and Receptive Language Difficulties, then ADHD/ODD then Significant Learning Difficulties which then got changed to Dyslexia throw the process of Tribunal.

 

Then he had Significan Social Interaction and literal thinking and ASD traits and Sensory Issues Thouth Private OT it is Sensory Intregration Disorder.

 

Only recently has he had ASD/HFA dx even though there is early evidence since he was three years old he had Autism.

 

It isnt the parents who want to seperate these disorders its the system who are staying well clear of the dx AUTISM.

 

JsMumxxxx

 

Edited November 15, 2009 by JsMum

[Mumble]

It isnt the parents who want to seperate these disorders its the system who are staying well clear of the dx AUTISM.

I didn't say it was, I was just trying to answer the question.

[JsMum]

I didn't say it was, I was just trying to answer the question.

 

 

My appologies there then, sorry I misinturpritted your post, I have said to people that J has Autism and they dont believe he has because there conceptions of Autism are of those of the rain man Autism, so I say J has High Functioning Autism and many are more excepting of that.

 

Any way Sorry mumble.

 

JsMumxxx <'>

 

 

 

[Mumble]

My appologies there then, sorry I misinturpritted your post, I have said to people that J has Autism and they dont believe he has because there conceptions of Autism are of those of the rain man Autism, so I say J has High Functioning Autism and many are more excepting of that.

 

Any way Sorry mumble.

 

JsMumxxx <'>

That's OK, I'm sorry too, having a bit of a bad day, around, erm, people taking my needs into consideration and responding to them... Ironic, huh?

 

I've been told to use the label of High Functioning Autism (or just Autism), particularly where I need immediate understanding, by someone who certainly knows what he's talking about because it carries most meaning to other people.

 

We'll always have cases where some people think the label is a bit of a fashion statement, trendy thing to have and people who don't understand it, thinking about Rainman etc. but I suppose if we reduce the labels the 'true' cases should outweigh these and possibly helping to develop people's understanding. I'm not sure I'm making sense with that, and anyway, I'm going way off topic.

[Karen A]

I also wanted to reiterate that Hyperlexia can mean the child can read, but the understanding of the meaning is not there. That would also tie up with the other language characteristics the child is showing.

There are a number of less known diagnosis such as hyperlexia, non-verbal learning disorder, semantic pragmatic speech disorder that although they can be a separate diagnosis in some countries, it is actually considered that they are all on the autistic spectrum.

But for this child, if their language is as disordered as suggested, that would rule out a diagnosis of Aspergers. So a diagnosis of ASD with other specific aspects mentioned as well if relevent eg. hyperlexia, disordered speech etc. And it could be that literacy is her 'island' of cognitive ability where she does very well.

 

Hi.I do not understand why you think that Asperger's Syndrome would be ruled out in this case.Ben is very similar to this child and he has Asperger's Syndrome.

I would also add that from the perspective of obtaining support Asperger's Syndrome would be a far more helpful diagnosis than hyperlexia,semantic pragmatic speech disorder or non-verbal learning disorder.These diagnostic lables are often not recognised by LAs in the UK as diagnostic categories within the ASD spectrum and so minimal provision is available.

I increasingly find the distinction between ASD and AS frustrating.Ben has the same difficulties in having AS as he would have if he had a label of ASD.In some ways life is more difficult.If he had obvious difficulties people might appreciate that he needs support and understanding.As it is because Ben happens to have advanced verbal speech and vocabulary he is expected to behave like a university graduate at age 11 because he talks like one....whilst he has the emotional ability of a seven year old.Karen.

 

[Karen A]

Yes I know. But if there is a language disorder or difficulties then that rules out Aspergers and therefore a diagnosis of an ASD is usually given, unless the child is severely affected and then a diagnosis of autism is given. And they (Aspergers, ASD, Kanners autism etc) all fall within the umbrella of an ASD. But I canot think of any other way of wording it, because if Aspergers is ruled out, then the next diagnosis if ASD. Would it help to say ASD excluding Aspergers?

 

If there is advanced verbal speech ability with Social Communication Difficulties as described then the most likely diagnosis would be Asperger's Syndrome.Asperger's Syndrome is a disorder of Social Communication which is a language disorder.

Any suggestion that in some way ASD is a language disorder but Asperger's Syndrome is not is in my opinion completely unhelpful.It is the type of theory which leads LAs to think that individuals with ASD require SALT input but those with AS do not.

 

I have spent the last week attempting to explain why my extremely intelligent but clearly autistic son might find spending christmas in a travel lodge difficult to an extended familly who appear to think that there should be no problem.At this moment in time I do not think whether I describe Ben as having AS or HFA or being on the Autism Spectrum his difficulties would be any different.However we have resorted to using the phrase autistic because it appears to be the only one that bring any hope of the familly understanding.

 

 

[justine1]

If there is advanced verbal speech ability with Social Communication Difficulties as described then the most likely diagnosis would be Asperger's Syndrome.Asperger's Syndrome is a disorder of Social Communication which is a language disorder.

Any suggestion that in some way ASD is a language disorder but Asperger's Syndrome is not is in my opinion completely unhelpful.It is the type of theory which leads LAs to think that individuals with ASD require SALT input but those with AS do not.

 

I have spent the last week attempting to explain why my extremely intelligent but clearly autistic son might find spending christmas in a travel lodge difficult to an extended familly who appear to think that there should be no problem.At this moment in time I do not think whether I describe Ben as having AS or HFA or being on the Autism Spectrum his difficulties would be any different.However we have resorted to using the phrase autistic because it appears to be the only one that bring any hope of the familly understanding.

 

Oh sorry Karen A I know this is off the topic but noticed you mentioning christmas and family.I am having the same problem right now.It is the first time in years my brother and I can spend a christmas together,combination of him travelling and my ex's possesiveness,anyway he is putting loads of pressure on me to come but I am worried.First of all it is rare we go to their house cause he has lots of expensive things (42" telly,new carpets etc.) and my four boys keep touching and I hate people getting angry with them.their one and only son is two and he is rough and a little selfish with his toys (I do love him so) which has cause problems when I go with my three yr old.There is also going to be four other adults who they dont really know so with my brother,his family,the guests and my family there will be a total of 13 people,and it will be noisy.If we need to leave if things get out of control I cant do so quickly cause I dont drive and will be relying on my in law to do this.I have explained everything but they just dont get it.I think more than anything else,even though I wont be cooking and can sit down for once,my stress levels will be so HIGH cause I need to make sure they dont break nothing,its so hard!

[bid]

Nobby, I would guess that as a looked after child her previous life experiences would play a huge part in how she now presents?

 

Bid

[Sally44]

Hi.I do not understand why you think that Asperger's Syndrome would be ruled out in this case.Ben is very similar to this child and he has Asperger's Syndrome.

I would also add that from the perspective of obtaining support Asperger's Syndrome would be a far more helpful diagnosis than hyperlexia,semantic pragmatic speech disorder or non-verbal learning disorder.These diagnostic lables are often not recognised by LAs in the UK as diagnostic categories within the ASD spectrum and so minimal provision is available.

I increasingly find the distinction between ASD and AS frustrating.Ben has the same difficulties in having AS as he would have if he had a label of ASD.In some ways life is more difficult.If he had obvious difficulties people might appreciate that he needs support and understanding.As it is because Ben happens to have advanced verbal speech and vocabulary he is expected to behave like a university graduate at age 11 because he talks like one....whilst he has the emotional ability of a seven year old.Karen.

 

In previous posts it has stated that the child uses echolalia, has problems with the use of pronouns, gives totally unrelated answers to questions, uses perseverant speech, does not appear to understand what is said to her. These are all things my son did and he was diagnosed with a speech disorder and the consultant paediatrician said that because of these language difficulties my son could not receive a diagnosis of Aspergers, because to get that his language development should be typical at least up to age 3.

However I personally feel that all those with a diagnosis of an ASD have language difficulties. It is just that those diagnosed as Aspergers can 'appear' more able when younger. It maybe that the more basic language acquirement is more typical, but as they grow up the difficulties become more apparent. That must also tie in with the fact that those with a diagnosis of Aspergers tend to do better academically. And that must be connected to a better understanding of language in some way. Those not diagnosed with Aspergers tend to struggle more at school, as is my experience.

 

Sorry you're having such a problem with the prospect of Christmas at Travel Lodge. Is your son worried about how Santa will find him? Is the idea to get all family members together?

 

 

[Karen A]

In previous posts it has stated that the child uses echolalia, has problems with the use of pronouns, gives totally unrelated answers to questions, uses perseverant speech, does not appear to understand what is said to her. These are all things my son did and he was diagnosed with a speech disorder and the consultant paediatrician said that because of these language difficulties my son could not receive a diagnosis of Aspergers, because to get that his language development should be typical at least up to age 3.

 

Hi Sally.I was reading the original description which sounded exactly like Ben.

the behaviours are (in a 3 yr old)

flapping when excited. if building a tower, has to stop, get up and flap every time they put a brick down

massive vocabulary with no understanding of answering/asking questions and communicating only with fixed statements ie 'my cup is empty' to mean can i have a drink

incredible intelligence (repeated knowledge and memory), but unable to learn basic concepts such as 'if you swing on the door it will hurt you'

high level of frustration/anger

inability to interract with children of their own age, with an ability to interract with older children through dominating 'rough' play only

confusion over emotion - cannot understand that just because you're not smiling it doesn't mean you're not happy

constant repetitive chatter to anyone and anything (has been caught talking to the toilet rim block!)

inability to understand that animals aren't people (expects the chickens to throw back a ball thrown at them)

good imaginative play based on repeated action (pretending to be a chef will ask 'what do you want for dinner?' to the same person repeatedly, and no matter what you say will answer 'we only have biscuits')

obsessive interests (has memorised and recites every road sign on our usual journey)

good enough eye contact

seeks attention but doesn't know when to stop/can only do this in fixed ways (reciting knowledge, taking your hand and dragging you)

 

The DSM-IV criteria state

 

''There is no clinically significant general delay in language [e.g single words used by age two years,communicative phrases used by age three .]''

I think that the description above would fulfill these criteria

 

 

Ben does give totally unrelated answers to questions and does not always understand what is said to him.These two would not rule out an AS dx.The CAMHS psychiatrist did debate about a HFA dx for Ben because he had dysfluency and there was some debate regarding whether the dysfluency could be acholalia.

I think the opinion on dx ASD,HFA or AS largely comes down to professional opinion and fashion.

At the end of the day the only real difference between AS and HFA is with regard to how the child was talking at the age of three.

 

 

Those not diagnosed with Aspergers tend to struggle more at school, as is my experience.

 

.I am not sure that those with Asperger's struggle less at school.The struggle is just a different struggle.

Ben is very able in some respects with accademic work.However he still finds the social side of things very difficult.This becomes more obvious as time goes on.

Ben could go on to university one day as he is intelligent enough.But he would need to have coped with all of the other bits of school work other than the lessons.If he does not cope he becomes so anxious that he cannot get to school at all.

 

The DSM-IV criteria do state that for a diagnosis of AS to be given the disturbance should ''cause clinically significant impairment in social,occupational ,or other important areas of functioning ''.

So for an AS diagnosis to be given there needs to be evidence of significant struggle.The only other factor is that there should be ''no clinically significant delay in cognitive development ''.This does not amount to not having to struggle in school in my opinion.

 

Ben also now knows that he is different and it is a painful situation to be in.What is more he does not feel he fits anywhere.He hates being seen as having SEN but he also knows he is different to his NT peers.As I thought would happen Ben is now refusing official SEN support in school.

I think I may make you weep.He has for the first time ever been offered weekly SALT input in a group at school but refused to go.

Fortunately the year head is excellent.She now knows Ben and understands him very well.She is providing a helpful ear and seat in her office when Ben needs it.But it is not easy.

I think that in some ways the situation is very difficult for those with AS who are able in accademic terms because there is so little appropriate provision.The numbers of parents on the Forum currently in the situation of having a child with AS who also have either mental health problems or are excluded or bullyed is very worrying.Many more have been in that situation.However intelligent a child is they will not be able to access an education if they are excluded or too anxious to cope with school.

 

My brother was very intelligent and would have been diagnosed with dyspraxia if he was alive now.He committed suicide during his 'O levels' because he could not write fast enough to complete an exam in time.That was in the 1970s.However it is still true that no amount of intelligence can resolve the issue of not being able to cope in education.

 

I will attempt to post my rant about christmas on a new thread later when I have thought about what to say because it is difficult.

Not sure where this post should be either really.It might be interesting reading for you Sally whilst wondering about secondary school options.

Edited November 16, 2009 by Karen A

[NobbyNobbs]

Nobby, I would guess that as a looked after child her previous life experiences would play a huge part in how she now presents?

 

Bid

yes, this certainly is the case, but we're concerned that after 6 months in care shes making limited to no progress in areas that she should be progressing in. behaviourally, she is mostly as expected considering her previous life although she hasn't made any progress for about 3 months now. but developmentally she has made no progress at all, and although her previous life experiences would put her behind to start with after 6 months she should be making at least some progress. we fully expect to either be told they can't make any assessment yet because of the instability in her life, or that they can't do it because shes looked after, but hopefully they'll be able to give us some pointers at least on how to help her.

 

thanks for all the help everyone. its given us some things to look at and more options with how to manage her/help her to learn