Okay here's the results

[reuby2]

Well they have said that my son is HFA.I don't know what else to say.I was okay then i wasn't ,then I am.Speak to you all soon.

Fi

xx

[smiley]

<'> <'> <'> <'> <'> <'> <'>

 

Mary xx

[Brook]

Hi Fi,

 

Come back when you are ready. <'> <'> <'> <'> <'>

 

Brook

[helenl53]

Hi Fi

<'> <'> <'> <'> <'>

[bevalee]

Lot's of <'> <'> <'> <'> <'> Fi.

[oracle]

<'> <'> <'>

 

Carole

[annie]

<'> <'> <'> <'>

 

Annie

X

[baddad]

At the risk of paraphrasing:

 

<'> <'> <'> <'> <'> <'>

 

See you when we see you.

Take your time, we won't be going anywhere...

L&P

BD

[phasmid]

We'll be here when your ready.

[mossgrove]

It's a big shock to the system when you get a diagnosis, even when you know it is coming.

 

Just remember you still have the same child you had yesterday , and you still love each other just as much.

 

<'> <'> <'>

 

Simon

[reuby2]

You are all so special and if it hadn't been for all you lot I would have gone under 3 weeks ago.Just being able to talk to you and read about your experiences has made me feel much more positive for the future.

Thanks ,Thanks, Thanks.

I feel much better after that huge bottle of bacardi!!

[DaisyProudfoot]

Take care <'> <'> <'>

 

It's hard at first and there'll be many emotions but we're here for you.

 

Daisy

[bid]

Loads of <'> <'> <'>

 

Bid <'>

[Malika]

Take your time and take care. <'> <'> <'>

 

Malika.

[supersec]

Big <'>

 

to you all

 

Love

Supersec

[Viper]

hits you like a sledge hammer right in the chest, and you saw it comming, don't hurt any less though.

 

<'> <'> <'>

 

Viper.

[reuby2]

I feel much better today thanks to you all but I am now questioning whether they have got it right! I have been reading some more about autism and when they say how lots of autistic children don't play with toys or have an imagination.Well "J" has a great imagination role playing and so on. I am now concerned that I may have given the wrong impression or answered their question wrong etc.I suppose the thing that made me so unsure is my mums attitude which is that there is nothing wrong with him, he is a bit quirky and that i have got him labelled.She thinks that the proffesionals are busybodies who make problems,don't know what they are talking about etc. and that i have caused this problem by telling them all this.Whearas a lot of people on this forum seem to have had to fight to get a diagnosis etc this has been really quick and out of the blue to us."j" has a speech problem but only with pronunciation, his understanding and comprehension is above average.So he has no problem communicating ,the problem is that his speech makes it more difficult for people to understand him, if that makes sense. Yes he is bossy and likes to tell us how to play and what to be in the game etc and gets angry if we don't do what he wants but we do put our foot down now about that which results in him getting more angry but in the end he will find a compromise. I can see what they mean by saying that he is putting all his effort into just coping at school (he is quiet there) . AAAAAAAAAArGGGG I don't know what to think.!!!!!!!!!!!!!!!!!!

Forgive any spelling mistakes please as i aren't feeling like checking it !!!!!!!

[nellie]

Fi <'> <'> <'>

 

I think lots of parents have their doubts when they finally receive a diagnosis. Imagination is one of the most difficult things to understand. It's just being discussed on this other topic. It might be worth a look.

 

New on list, Triad changes

http://www.asd-forum.org.uk/forum/index.ph...t=0entry51162

 

It's an emotional time, take your time but if you need to discuss anything, shout, scream or cry, this is a safe place to do it. You will get lots of support.

 

Take care

 

Nellie <'>

[asereht]

Take your time to digest things <'> <'>

[Malika]

Hi Reuby,

 

I am glad you feel better it is indeed a difficult time you are going through, with all sorts of mixed feeling, things will improve as you understand better. <'>

The next quote is about world references for the Dx of ASD I put it already on the other topic __reason for autism,genetic mrcury..._ but I put other things with it so thought it would be better to copy paste it again for you to read, hope it will help.

 

Take care. <'> <'>

 

Malika.

 

Autism-Related Disorders in DSM-IV

Meredyth Goldberg Edelson, Ph.D.

Department of Psychology, Willamette University

Salem, Oregon

The new Diagnostic and Statistical Manual of Mental Disorders, 4th edition (DSM-IV) came out in the summer of 1994. There have been numerous changes which affect the diagnoses of Autism and related disorders. This summary will review those changes and the possible impact of these changes on persons with Autism and related disorders.

First, the category of disorders under which Autism falls, Pervasive Developmental Disorders, are now coded in a different location in DSM-IV than in its predecessor, DSM-IIIR. It used to be the case that the Pervasive Developmental Disorders were coded on Axis II, the axis that was reserved for long-term, stable disorders with relatively poor prognosis for improvement. Pervasive Developmental Disorders are now coded on Axis I, the axis that is used to diagnose episodic and more transient clinical disorders. The possible implication of this move is the recognition that symptoms of these disorders can vary and possibly improve with intervention whereas the disorders which remain on Axis II, mental retardation and the personality disorders, are typically long-term and often unresponsive to treatment.

In addition to moving the axis on which these disorders are diagnosed, the diagnostic criteria for Autism has changed slightly, and three Autism-related disorders (which had been recognized in the European community's International Classification of Diseases (ICD) system for awhile) have been added to DSM-IV. In order for a diagnosis of Autism to be made, the person still needs to evidence problems in three broad areas: social interaction, communication, and stereotyped patterns of behavior. However, the number of symptoms which fall under these three broad areas have been reduced from 16 to 12 to make this diagnostic category more homogeneous. The individual needs to evidence 6 symptoms spanning the three broad areas with at least two symptoms indicating social interaction deficits, and one symptom in each of the communication and stereotyped patterns of behavior categories. The symptoms which fall under the social interaction category are: marked impairment in the use of multiple nonverbal behaviors; failure to develop age-appropriate peer relationships; lack of spontaneous seeking to share interests and achievements with others; and lack of social or emotional reciprocity. The symptoms which fall under the communication category are: delay in or lack of spoken language development (with no compensation through alternative modes of communication); in verbal persons, marked impairment in conversational skills; stereotyped and repetitive use of language; and lack of spontaneous age-appropriate make-believe or social imitative play. The symptoms which fall under the stereotyped patterns of behavior category are: preoccupation with at least one stereotyped and restricted patterns of interest to an abnormal degree; inflexible adherence to nonfunctional routines or rituals; stereotyped and repetitive motor mannerisms; and preoccupation with parts of objects. Besides at least 6 of these symptoms, there also needs to be delays in either social interaction, social communication, or symbolic or imaginative play. Another change is that the age of onset of these symptoms has to occur prior to age 3.

A new disorder added to the DSM system is Rett's Disorder. In order for this diagnosis to be made, all of the following need to be present: apparently normal pre- and perinatal development; apparently normal psychomotor development through the first 5 months of life; and normal head circumference at birth. In addition, all of the following symptoms need to occur after a period of normal development: deceleration of head growth between 5-48 months; loss of previously acquired purposeful hand skills between 5-30 months with subsequent stereotyped hand movements (e.g., hand-wringing); loss of social engagement; appearance of poorly coordinated gait; severely impaired expressive and receptive language development; and severe psychomotor retardation. The symptoms of Rett's Disorder are similar to Autism but the prognosis is poorer; and in Autism, the symptoms may or may not have occurred following a period of normal development.

Childhood Disintegrative Disorder is another new diagnosis in DSM-IV. This disorder is also similar to Autism, but there must clearly be evidence of apparently normal development for at least the first 2 years of life (with regard to communication, social relationships, play, and adaptive behavior). This category covers what some professionals refer to as "Regressive Autism" where the individual develops Autistic symptoms much later than a "typical" Autistic child. For a diagnosis of Childhood Disintegrative Disorder to be made, there must be a clinically significant loss of previously acquired skills (before age 10) in at least two areas: expressive or receptive language; social skills or adaptive behavior; bowel or bladder control; play; or motor skills. Additionally, there needs to be abnormalities of functioning in at least two of the following areas: qualitative impairment in social interaction; qualitative impairment in communication; and restricted, repetitive, and stereotyped patterns of behavior. This last criteria is the same as in Autism.

The final new Autism-related disorder added under the Pervasive Developmental Disorders section of DSM-IV is Asperger's Disorder. For this diagnosis to be made, there must be qualitative impairment in social interaction as manifested by at least 2 of the following: marked impairment in the use of multiple nonverbal behaviors (e.g., eye contact, gestures); failure to develop age appropriate peer relationships; lack of spontaneous seeking to share interests, or achievements with others; lack of social or emotional reciprocity; restricted repetitive and stereotyped patterns of behaviors, interests, and activities as manifested by at least 1 of the following: preoccupation with at least one stereotyped and restricted patterns of interest to an abnormal degree; inflexible adherence to nonfunctional routines or rituals; stereotyped and repetitive motor mannerisms; and preoccupation with parts of objects. There must additionally be clinically significant impairment in social, occupational or other functioning; and no clinically significant delay in language, cognitive development, adaptive behavior, or in curiosity about the environment. Asperger's Disorder is the diagnosis which will likely be made for persons who have traditionally been labeled as having "High Functioning Autism." It is the appropriate diagnosis for individuals who have evidence of many Autistic-like symptoms but for whom there are no language impairments.

The reasons for tightening the criteria for Autism and for adding Rett's Disorder, Childhood Disintegrative Disorder, and Asperger's Disorder to DSM-IV is to recognize that Autism is a disorder with many possible symptom variants. Because of this, individuals diagnosed with Autism in the past have been heterogeneous. This has made it difficult to conduct research to determine the etiology, prognosis, and appropriate treatment for individuals with Autism. Hopefully, as the DSM system recognizes the variability of Autistic-like behaviors across individuals, researchers can determine the etiologies and treatments for each of these related disorders. One question that remains unanswered due to this refinement in the DSM system is how the schools will recognize the need for services for individuals in all four of these diagnostic categories, not just for those diagnosed with Autism. Currently under PL 94-142, individuals with Autism must have services provided for them by the schools. However, individuals with Pervasive Developmental Disorder (PDD), the category that used to cover Asperger's Disorder-like symptoms and atypical Autism in DSM-IIIR, often had difficulty receiving services through the schools. Hopefully, the push for more homogeneity in individuals with Autism and Autism-related disorders like Rett's Disorder, Childhood Disintegrative Disorder, and Asperger's Disorder, will not result in some individuals losing out in much needed interventions.

[/color]

[reuby2]

Thanks every one and Thanks Malika,

I took the time to understand what you have printed and it kind of explains things better.Talk about conflicting emotions, right now I am feeling angry at society for making my son different (i know it's not society that is to blame but they will treat him as having a " disorder" ) as i say i am feeling angry (in case you didn't guess)

I don't want my son to suffer through school etc because he acts differently, walks around the playground on his own and doesn't like the children coming up to him.I want them to do something so that he doesn't have to spend dinnertime on the playground.I asked Camhs and also his teacher who is the SENCO (she is great) about getting a statement ,which i have read about on here, but they both discouraged me from doing that and they didn't bring it to my attention in the first place. They have said that the next step is to get the Autism Outreach Team to come into school and help with strategies etc. The school he is at now are very good however next september he will start a new school so I don't know how well they will help. Will a statement help?

The teacher said that it is just a piece of paper and not to worry about it , at Camhs they said it would be very difficult to get one.

I know it's stupid but i just keep thinking if he would only talk to the kids or act differently he would be a lot happier, school is torture to him he hates it. Why don't school have activities at dinnertime anyway for those kids who don't enjoy having nothing to do?????????????

Another point is that "j" had a bad reaction to his first MMR and I haven't let him have his second but i swear that after that he was never the same, always ill etc.

Oh well you could never prove it anyway.

Thanks for letting me rave, I am a nice person usually ,quite mild really but at the moment i feel opinionated !!!!!!

[kirstie]

Aw rant on, it will make you feel a bit better being able to vent. We all do it! A huge <'> to you and your boy.

It is such an emotional time when you get the dx, i felt the same and i knew it was coming it's such as shock to hear some-one saying it out loud in an official way, if you know what i mean.

I felt so down over that first week-end thinking, will he get married? will he leave home? will he manage school? the questions that rattled around in my head were endless. I just felt an overwhelming sense of sadness for him, but looking back it was probably more for me, as selfish as that sounds! He was (still is) blissfully unaware that he is 'different' for want of a better word. These were all my hopes for his future not his. But it's natural and i think most of us here felt pretty much the same way.

Anyway there i was feeling quite down in the dumps when i saw one of the Mums at the nursery who i hadn't seen around for a while, we got to chatting and she told me that her daughter had been diagnosed recently with retts syndrome. A totally devastating time for her and her family and as she spoke and told me what will happen to her beautiful girl, how she always looked forward to shopping and going for coffee with her daughter and what will never be for them i had tears in my eyes and i thought, snap out of it, you have nothing to feel sorry about and so much to look forward to. That's just how it happened for me and it was the kick up the bum i needed at that time. I do know how you're feeling, but you will work through it and just know you're not alone.

As for the statement, i'm not really familiar with it as we have A record of Needs up here in Scotland but it is most definatley not just a peice of paper it's a legal and binding document stating your childs needs and how they should be met. ie speech therapy, occupational therapy. They do take a long time and they're not always easy to get but unfortunatley it seems to be the way that we hve to ask for these things! If you think it will help your son then push for it, speak to your Educational Psychologist and have him/her put the wheels in motion.

Good luck, you'll be just fine - i mean, you have us afterall!!!

[Malika]

Hi Reuby

 

you are right to feel opinionated , don't worry we all are like this here it is the only way to get some help for our children, a statement is not just a piece of paper it is a legal document that is why school and LEA do not like them and try to avoid them.

Playground time is always a difficut one for our kids, mine sometimes get to play sometimes just go around on his own not that anybody is interested, it would be nice to have something else they could do.

 

I think there are 2 issues here one is the lack of staff and the fact that they do not understand autism they seem always to think that, AS ASD children by being forced to mixe with other children will eventualy get on with it and able to make frienship, even if this rarely happen on its own they need to work out some way to help them like frienship groups.

 

Last year for 3 months H had a social activity group twice a week this year this has been reduce to once a week and sometimse does not happen at all.

What would be nice I think for our children would be to set up activities where they could shine may be drawing or computer activities in order for them to show other children that they are good at certain things even if they cannot play football.

 

Try to get advice from the IPSEA about what help you can get for your child they are good and can give legal advice.

 

Hope things get better soon.

 

Take care. <'>

 

Malika.

[Guest hallyscomet]

Hi Reuby

 

I am now concerned that I may have given the wrong impression or answered their question wrong etc.I suppose the thing that made me so unsure is my mums attitude which is that there is nothing wrong with him, he is a bit quirky and that i have got him labelled.She thinks that the proffesionals are busybodies who make problems,don't know what they are talking about etc. and that i have caused this problem by telling them all this.

 

Many of you will tell that this is very natural for parents partners brothers and sisters etc etc to react like this. Some worse than others. The thing is it doesn't amke you feel any better. Take a deep breath, and be prepared for reactions like this (Its Denial) they like you will go througha grieving process, everyone does when they get a diagnosis like this. Take it easy on yourself, be gentle with yourself, don't worry about trying to convince anyone of anything. Just look after you and your child, they need you. If you have any doubts about anything, go back to them and talk to them, till you are absolutely clear in your mind. Heres lots of these all the way from Australia <'> <'> <'> <'> <'>

 

It gets better, just give yourself time

 

Hailey

Edited November 20, 2005 by hallyscomet

[reuby2]

THANKS Malika,Kirtsie,halleys comet and everyone else who has replied.

 

It's amazing how connecting with another human being makes you feel much stronger.I am so glad I found this site !!!!!!!!!!

Edited November 20, 2005 by reuby2

[lil_me]

Better late then never but <'>

 

I also tried to deny my sons diagnosis. Looked for anything possible that would make it incorrect. Eventually had to admit it to myself that I was right and they were and get on with things. Took me a while tho.

[kirstie]

Reuby hon, you are doing all the right things, honestly.

We are all here anytime. Our dx actually helped me to bond with my Son, i was so worn down and i didn't understand him so for us it couldn't have come at a better time. Now i am fiercley protective and so very proud of him. Our dx opened the door for lots of interventions and professionals that we would never have had the access to otherwise. Unfortunatley nothing in our 'world' comes without a fight so be prepared, he who has the biggest gob and all that....

Hope to hear from you soon, take care,

Kirstie. <'>

[Jadensmum]

Just sending some more <'> <'> <'>

 

Denisex

[loulou]

Hi reuby,

 

My son (7) was diagnosed 6 months ago. I was expecting it, but when i was formally told, i still felt really shocked.

 

I, like you, thought that maybe i hadn't answered the questions correctly.

 

I was really angry with the world for a while (sometimes still am!), then i felt sorry for myself, then i was in denial!

 

Last week i went to my first parents evening at Kai's new special school. I asked the teacher if she thought he had AS/ASD and she said (in a nice way), "Are you in denial? You need to wake up! Yes he definately has AS but that's not always a bad thing."

 

I think that was the wake up call i needed, because i have now totally accepted Kai's diagnosis and love him even more for it.

 

<'> <'>

 

These things take time to get used to.

 

Loulou x

Edited November 24, 2005 by loulou

[jewels]

Hi all,

Liam (9) was only diagnosed with AS on 30th september 05 and im so full of questions and i really havn't been told anything as iv only saw the doctor at the communication clinic (the day he was diagnosed) where i was given a few leaflets and was told to look up AS on the net or to buy some books on AS, then last thursday (or was it 2 weeks ago???) not sure any more, anyway he saw the OT and she had sent away forms for disability and DLA when she was on the fone the week before and she helped me fill in bits of the form for the disability which i found very hard to take.

Even now i havn't finished it and want to change some of the things she put as it sounds too awful

I had already had a parents night last week and his teacher told us he was doing really well ect.. but when i asked him if he could fill in part of the form for someone knowing the child he put a description saying he was very excitable, needs constant attention and help and i wasn't prepared for that (this was yesterday)

 

Anyway im not really sure where my head's at just now but i can't think of anything else to say.

 

Good luck to you all.

Take care

Luv

Julie x

[reuby2]

Hi Julie,

I know just how you are feeling right now, I have an inherent need to defend my son ,I think it's because I don't just want everyone to Sum him up or think they know him because they know the label.If any of that makes sense give yourself a choccie biscuit!!

I thought at first that hearing everything that was said about my son and reading it in writing (first report, I've not received the final one in writing yet) took something away from him or somehow was summing up his whole life. However I have spend the last 5 or 6 weeks educating myself and I have found it especially

Helpful to read what adults with autism and aspergers have to say (as well as everyone else on this site,it goes with out saying..."i'm not worthy,i'm not worthy ) I have now come to the conclusion that Life is life,unique,our life may be a bit different or we may have to work harder and yet we still get to see our children laugh (at what they think is funny) and smile and that makes it all worthwhile.My son is still my son and Nothing has changed. I think the best thing is them having support in school.

Forgive me for wittering on.I feel really positive about things now (i didn't at first because i didn't understand and we still haven't been given any leaflets or info by the proffessionals) but this site is great!!!!!!

 

"WE LOVE KRISM,WE LOVE KRISM"

[ksasnic]

hey jewels keep what the lady put down on your dla claim form I know its hard but if you lighten it up they will think you don't need it... and throw in a leaflet or 2 of aspergers so they can see that it is a real problem.. and also photocopy the form cos in 3 years time you'll need to reapply and knowing what you put first time round helps as after the first claim the next claim is not a foregone conclusion I think they must destroy the files previously or they are being so sneaky as to catch you out to see if you are lying.. anyway good luck

 

also big supa doopa <'> to reuby2