is anyone around???

[bonkerz]

need help writing my letter of complaint about why i feel DS deserves a 2nd opinion.
have long list of problems picked up in report from CAMHS of traits i feel point towards autistic spectrum problems. Need help finding evidence on net which back up my claims.can anyone help?

Have you made a draft of your complaint? If you post it i'll try to help you. Or you can email me a copy on [email protected]

I would have thought that the best way of backing up your claims is to list the areas covered by the DSM iv or IC10 and then give examples from your ds behaviour as evidence that he meets these criteria.

?Frustration at being unable to reach own high standards
?Difficulty in executing Ideas
?Low Self Esteem
?High Anxiety Levels
?Talkative and easily distracted
?Difficulty with fine motor skills i.e. using a knife and fork
?Not sustaining Play, not engaging in reciprocal play and choosing to play alone
?Problems with left/right discrimination
?Problems with comprehension
?The need for instructions to be broken down and repeated often to be able to fully understand
?Unusual tone to his voice and immature speech patterns
?Problems with spatial awareness
?Unable to understand sarcasm and figures of speech
?Struggles to identify emotions other than happy and sad
?A literal thinker
?Struggles with recognising his own emotions

these are the issues they have picked up on in the report
how can i find the criteria

would this be it???????

?I) A total of six (or more) items from (A), (B), and (C), with at least two from (A), and one each from (B) and (C)

(A) qualitative impairment in social interaction, as manifested by at least two of the following:

1. marked impairments in the use of multiple nonverbal behaviours such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction

ds does make eye-contact, but it is always on his own terms ? he often will not look at a person if they are speaking to him, and will only sometimes look at someone when he speaks to them. His facial expressions are often over-exaggerated or inappropriate e.g. smiling when someone is hurt or looking over-the-top when cross.

1. failure to develop peer relationships appropriate to developmental level

ds has always had trouble with children his own age, finding it very difficult to play with them rather than bossing them about. He finds it very hard to make friends as he just wants to control them. He still finds it impossible to share with others. Evidence of this is within his school logs and also his IEPs state he needed extra support in making social connections.

1. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people, (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)

Not sure about this one for DS TBH, he needs to control games and the report says that he preferred to play on his own rather than with the other children.

1. lack of social or emotional reciprocity

This is about ?give and take? with another person, so being able to compromise and react to other people?s emotions properly. the report states that DS was unable to recognise emotions other than happy and sad. Compromising is something that DS is really struggling with and we have been using fixed choice strategy with him for nearly 2 years now and he still doesn?t understand that what is offered is all he can choose from. This is the same at school.

(B) qualitative impairments in communication as manifested by at least one of the following:

1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)

not applicable really to DS although some strange speech patterns were noted in report for example he says ?I do some? and ?won points 6?

1. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others

DS hardly ever initiates conversation and then will talk at rather than with people, about topics that he wants to talk about.

1. stereotyped and repetitive use of language or idiosyncratic language

Ds?s language and vocabulary are also excellent. He also uses made-up words sometimes and doesn?t always understand the rules of language e.g. he will talk in a teacher voice to children at school to tell them off(I am constantly pulling DS up about his tone and how he talks to me like I am a child etc) the report stated that DS talks in an unusual loud tone! He will also find it hard to instinctively know the right thing to say in certain situations and so has to learn rules/ manners by heart, like learning time?s tables, rather than knowing what to say. DS is constantly needed to be prompted to say please and thankyou and hellp and goodbye and will say very inappropriate things to people which can cause embarrassment!

1. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

Ds has never really played with toys at all. Even now he likes his PC and his Leapster but doesn?t really play with anything. We have tried lego and trainsets and magnetix but he prefers to play on the pc or write and draw. Imaginative play has never been DSs thing although the report says he did well when they has to make up a story.

(C) restricted repetitive and stereotyped patterns of behaviour, interests and activities, as manifested by at least two of the following:

1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

Ds gets obsessed by tv programmes and DVDs. He will watch Scooby doo for hours if we let him and his obsessions change every few months. We have had Scooby doo, power rangers, eggheads, lazy town and currently its golden balls. His obsessions are very OTT and if he misses an episode or isn?t home to watch it we can have tantrums for hours after!

1. apparently inflexible adherence to specific, non-functional routines or rituals

Ds is also a stickler for things done his way (unfortunately we don?t always know what his way is and this can cause problems! Ds has to have same cup, plate, cutlery. He has to eat at certain times or this can create tantrums. He gets dressed in a certain order and will lash out if you change that order. He will also eat his food in certain order.

1. stereotyped and repetitive motor mannerisms (e.g hand or finger flapping or twisting, or complex whole-body movements)

Ds has a blinking problem. Despite having perfect vision he still blinks ALOT

1. persistent preoccupation with parts of objects

not sure about this TBH

(II) Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:
(A) social interaction (have report from nursery DS attended from age 2-4 to say he preferred to be in baby room and did not have friends)
(B) language as used in social communication
(C) symbolic or imaginative play (Nursery also pointed out DSs favourite toys were puzzles and he did not join in imaginative play)

The DSM further states that: ?Individuals with Autistic Disorder may have a range of behavioral symptoms, including hyperactivity, short attention span, impassivity, aggressiveness, self-injurious behaviors, and, particularly in young children, temper tantrums. They may want to be in control of other people to reduce the anxiety that they feel about a world which seems strange to them.?

the report recognises DS has a problem keeping on task. One thing that CAMHS NEVER looked into or took into account were the numerous reports form 2 MS schools detailing DSs issues and behavioural problems. His need for control, his rages and the fact that he opened the car door on the A47 screaming he wanted to kill himself and that he self harms when in a rage.

Several things on your list relate directly to some of the DSM iv criteria. It might help to use some actual examples too. You also need to inlcude that he has exhibited these behaviours for longer than 6 months as that is a prerequisite of getting a dx. I think they also need to have been shown before the age of 7. I'll check that one and get back to you.

Since they seem to be suggesting that his behaviour is due to family dynamics by referring you for MIM then I think it would also be helpful for you to include the strategies you have used to try and help him.

That looks like the right info

Just read through your last post more carefully and you definitely seem to meet the criteria with the examples you've given.

Is this for ASD? Have you looked at the list for AS?

thankyou dusty i really appreciate this. DH is at work and i have just spent 3 very unhelpful hours talking to CAMHS and need to take this letter down to them first thing in the morning! Can i email oyu what i have currently?

Of course go ahead

I've had a quick look. Is the complaint being sent to CAMHS? I ask because if so then you do not need to explain terminolgy etc. They will know what the DSM iv is and what the ASD criteria are and what they mean.

Is the list you give in the middle of the email taken from a report that was done or is it your observations and the report together?

the list of behaviours are things that cahms themselves worte in the report that they observed of DS. NONE of these issues are mentioned in the summary though. I copied and pasted the DSM stuff so thats why it is there and the complaint is having to go to the buisness manager and lead clinical so not sure if it needs to be there or not TBH

i dont know what is wrong with DS to be honest he seems to meet criteria for alot of the autistic spectrum Have also been looking at PDD, ODD, PDA, all those types of issues as conflict seems to be a big trigger to his behaviour TBH

Ok. Well looking at what you've written you've certainly covered a lot of info. It doesn't actually read as a complaint though if thats what you were aiming for - more as a request for further assessment. I think that at this stage that is fine though. If they refuse to assess further you can amke it a complaint then.

I think its important that you make clear that you want a second opinion becuase you do not agree with the conclusions that CAMHS have come to so far. Then back up your opinion by showing that your ds meets several of the DSM iv criteria for ASD by using your own observations plus those made by the team that assessed him.

Persoanlly i would put the DSM iv part first with your observations as evidence (much as you have done already) and then add a paragraph below that to show that the CAMHs report also notes behaviours consistant with these criteria.

I have the same problem with my ds as he is definitely on the spectrum but I'm not sure he'll get a dx that reflects that. Fortunately for us his school do meet his needs and I have my LEA rep on side to kick the middle school he's transferring to in Sept up the arse of they try to wriggle out of anything in his statement.

I appreciate your frustration with the lack of dx but for us the statement has been far more important as far as getting help is concerned.

see we have a full time 32.5 hour statement BUt his current aminstream have said even with a statement they cannot meet his needs. We have a fab autistic unit attached to a mainstream school about 15 minute drive from us and the head of the school reckons DSs needs will be best met there although he has said DS will also need alot of MS input. We cant access theunit without a diagnosis and although we can put DS in the MS part of the school he can have no access to the unit without recognised diagnosis!

have emailed oyu what may be my final copy. if oyu can suggest anything i would appreciate it

should i include any evidence or suggestions that i think he may have ODD/PDD etc?

You also think he might have ADHD don't you? It might be worth doing a similar thing with the ADHD criteria as you have with the ASD. Don't forget he doesn't need to meet each and every thing on the list.

I never thought he had ADHD untill the psych mentioned it but even now i struggle to see ADHD! DS isnt hyper all the time although he can be and his concentration is brill if its something he likes.

I would go for ADHD rather than ODD as some professionals don't accept ODD as a dx and also it tends to be seen as co-morbid with ADHD anyway. Not sure with PDD - I think many see it as as US dx although i know it is used in the uk soemtimes.

Hope you don?t mind me butting in. My DS is going to be assessed for ADD not ADHD as he is not hyperactive. The paed told me that although he may fit the criteria in theory by ticking the required number of boxes, he wouldn?t be diagnosed with the condition if it didn?t impact significantly on his daily functioning. I assume she meant both at school and at home as traits have to be observed in 2 locations. BTW my DS's concentration is good if its something he likes too. I think that quite common with AD(H)D

I think you need to open the letter stating that your son has just been assessed by CAMHS and that you dispute their findings and want a second opinion / further assessment. Then most of the rest of the letter shows in detail the reasons why you dispute their findings and want a second opinion etc. Then summerise the points made in a final paragraph.

Good point about ADD paranoid. I always think about ADHD as that fits DS

Yes, Bonkerz - the thing you've done, as I did, relates to the official ASD criteria.

Here's the ADHD criteria:

DSM-IV Criteria for ADHD
I. Either A or B:

Six or more of the following symptoms of inattention have been present for at least 6 months to a point that is disruptive and inappropriate for developmental level:

Inattention

Often does not give close attention to details or makes careless mistakes in schoolwork, work, or other activities.

Often has trouble keeping attention on tasks or play activities.

Often does not seem to listen when spoken to directly.

Often does not follow instructions and fails to finish schoolwork, chores, or duties in the workplace (not due to oppositional behavior or failure to understand instructions).

Often has trouble organizing activities.

Often avoids, dislikes, or doesn't want to do things that take a lot of mental effort for a long period of time (such as schoolwork or homework).

Often loses things needed for tasks and activities (e.g. toys, school assignments, pencils, books, or tools).

Is often easily distracted.

Is often forgetful in daily activities.

Six or more of the following symptoms of hyperactivity-impulsivity have been present for at least 6 months to an extent that is disruptive and inappropriate for developmental level:

Hyperactivity

Often fidgets with hands or feet or squirms in seat.

Often gets up from seat when remaining in seat is expected.

Often runs about or climbs when and where it is not appropriate (adolescents or adults may feel very restless).

Often has trouble playing or enjoying leisure activities quietly.

Is often "on the go" or often acts as if "driven by a motor".

Often talks excessively.

Impulsivity

Often blurts out answers before questions have been finished.

Often has trouble waiting one's turn.

Often interrupts or intrudes on others (e.g., butts into conversations or games).

Some symptoms that cause impairment were present before age 7 years.

Some impairment from the symptoms is present in two or more settings (e.g. at school/work and at home).

There must be clear evidence of significant impairment in social, school, or work functioning.

The symptoms do not happen only during the course of a Pervasive Developmental Disorder, Schizophrenia, or other Psychotic Disorder. The symptoms are not better accounted for by another mental disorder (e.g. Mood Disorder, Anxiety Disorder, Dissociative Disorder, or a Personality Disorder).

Based on these criteria, three types of ADHD are identified:

ADHD, Combined Type: if both criteria 1A and 1B are met for the past 6 months

ADHD, Predominantly Inattentive Type: if criterion 1A is met but criterion 1B is not met for the past six months

ADHD, Predominantly Hyperactive-Impulsive Type: if Criterion 1B is met but Criterion 1A is not met for the past six months.

Do the same with that as we've done for ASD.

Good luck with things xxx