diagnosis of AS

[abbycieran]

Hi, I have a friend who has a 9 yer old son with aspergers and recently my 5 years old son has been seeing a child clinical phyciatric nurse(TOM). On our last vist Tom asked us if we were aware of Aspergers as he would like to refer my son on to a specialist for confirmation that this is what he has. Tom has said in his opinion this is what Cieran has and he has to see a specialist before he can receive any of the support and help he needs. When I have discussed this with my friend she seems to think I am wrongly saying my child hasAS and that I should wait to see the specialist as in her case she was not told by anyone else but a specialist that her child has AS. She has been offering help butt hen retracting it and upsetting me by saying that my son is not AS until the doctor says so and that Tom is not qualified to say he is. Is this right? Tom did say in his opinion it was AS and he runs classes for AS children. HE also asked us to consider going to parenting classes to help us come to terms with hasving a child with AS. Why would he do that if he thought there was to possibility he doesn't have it or if he is not qualified to make that diagnosis.

 

If anyone can help me I would appreciate it as I feel very let down by my firend and think she thinks I am makeing more of it than I should.

[Minxygal]

The fact that this nurse has concerns about AS is enough for you to get it investigated. To be honest it sounds like your friend is not being very supportive and while in a way she's right that he is not 'officially' AS until you have the diagnosis it certainly wouldn't hurt to start applying some of the stratagies that we use to help our kids, the structure and that sort of thing, because in my honest opinion most kids benefit from the stability and the structure that we offer our kids.

You are his mum, so in all truth I would say you already know if the gut feeling of this nurse is right, I know I did with mine.

 

Incidently it was a health visitor that first told me that they thought Mark had autism, not a doctor.

 

 

You know, it's a long shot but if your friend is a real friend maybe she finds it upsetting that someone has mentioned this to you. Just maybe she is finding it hard to face the fact that you might have to face someo f the experiences she's had to go through. I only say this because when I look back at what we've been through obver the past few years there are experiences I wouldn't wish on my worst enemy, let alone a friend.

Try talking to her again. You never know.

[Suze]

Hi abby and welcome <'> <'> , glad you found us.I doubt very much wether a nurse such as Tom would be telling you such things if he was,nt pretty damn sure he was correct.Your friend maybe trying to shield you, or help , but obviously it has,nt helped.ASD/AS kids are incredibly different, the DX pathway is very different and some peeps on here will have been DX from different specialist.My son was dx by a physch, but some are dx by a pead.I found I lost a few friends during my sons DX, comments such as "there,s Nothing wrong with him", "you,ve just spoilt him", made me stop seeing one friend.(I don,t miss her or her perfect kids).The path to DX is very emotional look after your little one and yourself and if your friend gets you down try to explain. If she can,t support you keep a distance till you feel stronger.This forum is great there,s loads of advice stay around and take care Suze xx.

[phasmid]

Hi abbycieran, sorry to hear your friend is reacting the way she is. I agree with the others though. This is a trained nurse suggesting this to you, I doubt he would do that without having a sound basis for his comment. It would be better for you if she was more helpful, suggesting reading material for you, rather than bring quite so blunt. She has, to a degree, a point. A suspicion of AS is not quite the same as a diagnosis, and that can only really be made by a specialist. This will not be an easy time for you, no-one wants to hear that there is something wrong with their child.

 

This board, as already pointed out, is very supportive so don't be afraid of asking anything you need to know. Someone will answer, you're not on your own. Good luck with getting to the bottom of things. Let us know how you're going.

Edited August 20, 2005 by phasmid

[oracle]

Hi Abby

 

Welcome. It was a Speech Therapist who rang the alarm bells for us - with both of our sons. After 10 year of trying to find out just what was the problem with the eldest - I would have been grateful if the Ice Cream Man had given it a name sorry. I do not mean to be flipant but it's good that Tom is trying to help you. OK he can not give an official dx but he has probably seen more kids with AS, or as many, as the person who will dx. I agree with the others try and find out now as much as you can and try some of the strategies to help you cope as a family.

 

You are in the right place and amongest friends here

 

<'> Carole

[nellie]

Welcome Abby

 

As you have already found out this is a great place for support and advice, lots of understanding from people who care.

 

There could be lots of reasons why your friend is reacting like this, hopefully it will all work out and you can support one another. Does she know about this forum?

 

Reading some of the many postings on here will help you get the bigger picture.

 

Good luck and keep us posted. Any questions, you only have to ask.

 

Nellie <'>

[annie]

Hi Abby,

 

Welcome <'> <'>

 

As everybody else has said, you're amonst friends here.

 

If only there were more people like Tom around .

 

Hope things work out with your friend.

 

Annie

<'>

[LizK]

Hello Abby

 

We've not had an official diagnosis of ASD yet with my 3 year old but it has been discussed at length with the paediatrician, speech therapist and area nursery SENCO. Although the paediatrician will be the one to make an official diagnosis we have had continued input from other HCPs and their assessments will be taken into account in any diagnosis.

 

Your friend's attitude cant' be helpful for you. Maybe she wne t along a different diagnostic pathway but it doesn't mean it is the only one. If you are seeing someone with an interest or expertise in AS, doctor or not, then their assessment is valid and worth acting upon. A doctor may rubber stamp any diagnosis but it doesn't mean to opinions or advice from other HCPs are any less relevant

 

Lx

[Flora]

Hi Abby. I agree with everyone else. The psychiatric nurse, having worked with AS children, is probably fairly well qualified to spot the signs even if he isn't able to officially diagnose it.

 

Some people have great difficulty getting a diagnosis, and others seem to get one very quickly. I think this depends on where you live.

 

We got our diagnosis very quickly (an ed psych diagnosed at the school and this was very quickly confirmed by a child psychiatrist).

 

As well as the area where you live being a contributing factor to diagnosis, some children are just so classic in their display of symptoms that the diagnosis is very straight forward. Maybe this is the case with your son, and possibly your friend found the process much more problematic when she was getting the dx for her son and can't understand why you are so near to a dx already?? Just a thought, though she should know what you are going through and would do well to keep unsupportive opinions to herself!

 

Good luck, and welcome. I'm fairly new here myself and I believe you will find (like I have) that this forum is invaulable for sharing experience and giving and recieving advice.

 

Lauren

[Mother in Need]

Hi Abby, the first person to mention AS to me was a friend who has an AS son herself, then followed by an independent educational psychologist. It took 4 months for the psychiatrist to do all his 'tests' and agree, whereas I met a speech therapist the other day who within 10 minutes of seeing him for the first time recognised he had AS.

I certainly agree with everyone else, that your TOM most likely knows more about AS than the person who will end up diagnosing your son.

There is a big difference between 'being the doctor or specialist' than living and actually working with a person with an illness or a disability.

[lil_me]

Hi Abby,

 

Just wanted you to know that I'm going through the same thing at the minute, my sons Ed Psychologist, Consultant and Teachers believe my son has ASD but he is going through a 16 hour I believe it is assessment at the moment which will include assessing him at school, home and at the family centre with a specialist. So at the minute I am unsure what my son has, apart from the ADHD and Dyspraxia he's already been diagnosed with, everything points to ASD but the specialist could say its something else. It makes it very difficult when discussing it with other people and trying to get help. If Tom works with children on the spectrum day in and day out he probably wouldn't mention AS if he didn't know what he was talking about. Luckily at least he has told you what he thinks, my sons Ed Psychologist and Teachers left me dangling for over a year whilst they wrote letters between themselves and specialists.

 

I have had mixed feeelings from parents with children with ASD and Aspergers, some who say if the specialist says he does not have ASD she is blind or stupid, and some who say I shouldn't even mention it or think he has it until this assessment is completed. But as I said so far this assessment has taken 19 months, next part is at the end of September and we need help now.

 

The people who have been the most supportive are someone called faye who is registered on here, her son is at the same school as mine, the people on this forum and the local support group.

 

I'm sure if you need any help or advice the people on this forum will be more than willing to help. If you ever want to chat/rant at someone my MSN and AOL messenger email addys are on here. The diagnosis process can be extremely stressful, sometimes I just feel like staying 'All of you just stop and leave me and my son alone' but it helps get the support they need.

Edited August 20, 2005 by lil_me

[abbycieran]

thank you all for your comments and support. I have contacted my friend and spoke to her about her comments and she has said she can see alot of simularities between Cieran and her son Liam and the reason she said those things is she knows what it is like to have a child with AS and doesn't want me to go through the same as she has. She is worreid about me as I have had postnatal depression since the birth f my daughter three years ago and suffer panice attacks. She thinks maybe this DX could make me feel worse. I have assured her the DX is actually the better thing for me as I now know I have not done anything wrong.

 

Cieran is a very intelligant child but it is little things that makes me beleive AS is the right DX for him. He cannot judge someones feelings and will behave the same no matter what the situation. He behaves terribly in public and it is as though he is in the supermarket with just me and no-one else is there. The others shoppers are invisible to him. The other night he refused to go to bed and after hours of trying, my husband told him his hair would fall out and he would be bald just as he is, Cieran took this litrally and when I went up to check on him later he asked me if he would wake up with no hair in the morning! . Although this is funny to an adult, Cieran can not tell the difference between truth and exageration. He does have very little interest in anything other than PS2 and PC games. He watches alot of films and can tell you the story from start to finish after seeing it just once. We have spoken to his class teacher however she said she has no problems with him at school at all. He has a couple of friends and does his work. He even got upset when the term ended as he was not getting homework!

 

Although it would be nice if my Cieran doesn't have AS, I and my husband have started to come to terms with him having it. It makes it easier to cope with him tantrums and moods in a way. We have spent such a ,long time thinking we had done something wrong, it was nice in a funny way to hear that AS is/could be the problem not us.

[lil_me]

Seems your friend was maybe just trying to protect you, which is nice in a way, but at least you've told her how you feel and hopefully you can help each other from now with ideas etc. There is stacks of info and ideas on this site, use the search function to search for anything particular or just ask, I've found noone minds people asking and they are amazingly helpful and supprtive on here. This forum and the people who use it have been a life line for me especially recently.

[MARGOT10]

Hi,we are in the same situation my daughters has been seeing a social worker for problems with her social skills and some bullying she endured.The social worker has now arranged for a 3di assessment to be done as he said in his proffessional opinion my daughter is on the spectrum as she has many of the traits.The only problem is he cant get it done until november which means my daughter will go back to school with no help.

I know this sounds terrible but there are some and I have met them who like getting the attention because of the difficulties they have with their child,and is it possible your friend might be annoyed that you are in the same boat.I do know this sounds awful and apologise if anybody is offended but there are people who want the world to believe they suffer more than you.I know you and I and all on here do not want our child to have it any harder than any other,but some like the attention it brings.Try and put some space between you and friend if you are anything like me you are having times when you keep crying and others when you think no my child looks so normal until they do something.Iam fnding thngs confusing,frightening,and also releaved.It must be very hurtful for you.

[Suze]

Hi again Abby glad it sounds like your friend is looking out for you....

[CarerQuie]

Glad to know that you've cleared the air with your friend;you'll need to support eacg other.I think only the Cliician can give the final dx but it was the SALT who first actually mentioned ASD.xx

[elaine1]

a speech therapist referred my son, i suspected he had AS and she agreed with me, even though our health visitor put me down as an over anxious mom cos i was 38 when i had him!!!!

 

I am an NNEB and had two other children aged 18 and 20 lol.

 

 

I think yr friend probably had to go through more of a struggle to get her son diagnosed and probably thinks you did it the 'easy way' if there is one!

 

I wouldnt worry about it.

[karin]

hi all read all your posts with interest as it gets nearer the time for the kiddywinks to go back to school me and hubby get nearer the time to go to the dreaded classes what are these for are they to help us cope with our kids behaviour been there done that stairs for 8mins 1,2,3magic you name it we have done it we have to attend 8 2hour sessions i read somewhere that sometimes a psychiatrist will send the parents to these classes to see if its the parents or the kids? can anyone enlighten me on this new to it? keep smilin luv karin xx