Official diagnosis - at last!!!!!

[szxmum]

Just heard through school just now that the Educational Pyschologist has officially diagnosed my ds, 17 with Asperger's Syndrome. It's bizarre, all of a sudden they are talking freely about Autism, communication difficulties, targets, outcomes, support - you name it. One well meaning member of staff said that my ds was "the most Asperger's young person she had ever met" - what the h*ll is that supposed to mean and is it supposed to make me feel better Am I now supposed to be grateful for this diagnosis?

 

How do I feel? I don't know - kn*ckered, exhausted, tearful, angry, resentful, bitter - any and all of those, take your pick.

 

I certainly don't feel elated and I don't feel reassured and I don't feel validated - I just feel saddened, why has ds and my family had to suffer so much before getting to this point? Yes I know - it does no good to look back or beat yourself up.

 

So... the facts of the matter now are:

 

DS has AS

DS has mental health problems - depression, anxiety, OCD and phobias

DS is disabled in that at this moment in time, he cannot function in "normal" society.

 

At this moment, he is in his bedroom and given the choice, that is where he would choose to stay - a safe place where no one can hurt him.

 

It breaks my heart

[sonj186]

Hi szxmum,

 

I know when Cam got his dx it was a huge relief! thankfully we only waited 4 years for his so im not sure how i would feel if he was 17! Personaly i was also glad when he got it as it means you can access lots more help and also people will take you more seriously if they have an official dx as opposed to saying"i think" you can say (in my case) Cameron has a diagnosis of asd.

 

sonj

[Mandapanda]

Hi szxmum

 

I really feel for you. The difference between people's reactions/responses before and after diagnoses can be totally infuriating!!

 

What makes me really sad is that none of us can 'break the mould'. Each and every one of us has to go through this battle for ourselves. We are not 'paving the way' for others to access diagnoses easier because those that follow us will still have exactly the same problems.

 

I hope that 'talking freely' will also mean they will take some action to help and support you. I found it a very mixed emotional time at diagnosis even though I expected it. Give it a while and it will all settle down.

 

Thinking of you. <'> <'> <'>

[Lisa40]

I can understand your frustration. My DD is 16 and was only diagnosed last year, which we had to do privately in the end. Since she went to secondary school her behaviour was not like others and all I got was "I have never in all my years as a teacher seen this kind of behaviour". I begged the educational psychologist for an assessment but was told she was an "indulged" child and needed more structure. Naturally as I was remarried it was the family dynamic that was at fault. For 4 years she struggled in various secondary schools, with refusals to go to school and camhs saying she didn't have a problem. SHe wasn't bad at school but refused to cooperate and would often ask to be excused and then hide in the toilets to avoid lessons. She was always insistent on going to school late, after others had gone in and there were days when she was in hysterics at the school gate that she didn't want to go in and I would be losing my rag telling her to pull herself together and get into school. If only I had known and the guilt I feel now for having put her through that. We have had the excuses from stomach aches, feeling sick, etc, all through her high stress levels and high anxiety levels. In the end we begged the doctor for a private referral and after assessments she was finally daignosed with AS and I actually felt quite relieved. Although the dx has brought up other issues. She was referred back to camhs after the dx, which they have accepted and whilst the psychiatirst has been extremely helpful (aiding me in getting our DLA) she doesn't really have much to offer in way of support. Says that DD now falls into the category of not being a child and not quite being an adult and that the options for help between 16-18 are quite limited. DD has been at home since last September and not gone to school and is a virtual recluse at home. She is quite happy at home all day on her computer and plugged into her iPod. THere are times when I am so angry and have felt so let down by the system. I just wish the original school she was at would have taken my concerns more seriously instead of taking the easy route and putting it back to the family dynamic and a spoilt child not wanting to go to school. So I understand your frustration and I have so been there and still am.

 

Lisa xx

[Sally44]

It is a time of very mixed emotions. <'>

My son did get a diagnosis at age 6, but the placement was totally wrong for him. Everyone was pushing to keep him mainstream. It was only whenl I really took the bull by the horns and began getting evidence that it wasn't working and by the time we were arguing over the final details of the statement the EP and AAT had recommended he should be in an autism only unit. How could they swing from one extreme to another!! I felt they had wasted my time and my sons chances to progress for over 2 years.

And when he finally got a diagnosis, I felt such a mixture of emotions: guilt, triumph, despair. I really think I went through the grieving process, because it became obvious to me that the son I thought I had (and the plans you have for the future) were just not going to happen. I suppose it was the death of those specific expectations I had, because my son was alive and well and essentially the same person pre and post diagnosis. And because I have other family members with other diagnosis and conditions etc, I knew that the diagnosis was not the 'end' but the 'beginning'. Felt like climbing a never ending mountain.

And I too felt it so bizarre that a few days earlier professionals were saying his difficulties were 'unusual, bizarre' etc, then two days later it was 'due to language difficulties, social interaction difficulties'. It was almost as if 'they' needed the diagnosis to formulate their ideas - not my son needing it! And then I spent along time angry and confused that the diagnosis didn't seem to achieve anything - as the fight for support continued.

BUT.... it does get better. You have a diagnosis, that should enable your child to access services, or at least to be better supported and understood in any environment. You may find that things fall into place now. Or you may find that you are continuing on the road of pushing for recognition and supports etc. But you have got a good starting point.

And, I don't know if other parents are like this, but I still find it is a merry go round of emotions. I can go months and be okay and everything is going quite well. Then my son will say something or do something I will be thrown back into turmoil over his future etc - but I think that is normal

[Sally44]

I can understand your frustration. My DD is 16 and was only diagnosed last year, which we had to do privately in the end. Since she went to secondary school her behaviour was not like others and all I got was "I have never in all my years as a teacher seen this kind of behaviour". I begged the educational psychologist for an assessment but was told she was an "indulged" child and needed more structure. Naturally as I was remarried it was the family dynamic that was at fault. For 4 years she struggled in various secondary schools, with refusals to go to school and camhs saying she didn't have a problem. SHe wasn't bad at school but refused to cooperate and would often ask to be excused and then hide in the toilets to avoid lessons. She was always insistent on going to school late, after others had gone in and there were days when she was in hysterics at the school gate that she didn't want to go in and I would be losing my rag telling her to pull herself together and get into school. If only I had known and the guilt I feel now for having put her through that. We have had the excuses from stomach aches, feeling sick, etc, all through her high stress levels and high anxiety levels. In the end we begged the doctor for a private referral and after assessments she was finally daignosed with AS and I actually felt quite relieved. Although the dx has brought up other issues. She was referred back to camhs after the dx, which they have accepted and whilst the psychiatirst has been extremely helpful (aiding me in getting our DLA) she doesn't really have much to offer in way of support. Says that DD now falls into the category of not being a child and not quite being an adult and that the options for help between 16-18 are quite limited. DD has been at home since last September and not gone to school and is a virtual recluse at home. She is quite happy at home all day on her computer and plugged into her iPod. THere are times when I am so angry and have felt so let down by the system. I just wish the original school she was at would have taken my concerns more seriously instead of taking the easy route and putting it back to the family dynamic and a spoilt child not wanting to go to school. So I understand your frustration and I have so been there and still am.

 

Lisa xx

 

 

After my son was diagnosed I did go back and see one of my local GPs who had told me that 'repeating TV dialogue is normal', (my son was and is echolalic) and that 'not appearing to understand language is typical for children his age' etc. I didn't get upset or emotional I just asked him if he remembered me coming with my son when he was 3+ with those concerns, and he said he did. And I said "we have recently been given a diagnosis of an autistic spectrum disorder, and I thought you might like to know that." He didn't really say anything, and I don't think he could have said anything really. But I did want him to know that 'maybe' he had brushed aside my concerns and treated me as 'an anxious mother', when he should have listened and at least asked some probing questions.

 

[frogslegs]

After my son was diagnosed I did go back and see one of my local GPs who had told me that 'repeating TV dialogue is normal', (my son was and is echolalic) and that 'not appearing to understand language is typical for children his age' etc. I didn't get upset or emotional I just asked him if he remembered me coming with my son when he was 3+ with those concerns, and he said he did. And I said "we have recently been given a diagnosis of an autistic spectrum disorder, and I thought you might like to know that." He didn't really say anything, and I don't think he could have said anything really. But I did want him to know that 'maybe' he had brushed aside my concerns and treated me as 'an anxious mother', when he should have listened and at least asked some probing questions.

When I got the diagnosis a few weeks ago (you may remember) I wrote to our GP and told him that he had had the dx and he had wasted 5 years of my son's time to progress by continually dismissing me and my concerns. I was very surprised to receive a handwritten apology. It took a few days for dx to sink in (had quite a few tears) and was glad I could have a break during the holidays. Now we are back to normal (it is the same child as before) but at least we have some reference to go on. Tomorrow I have meeting with school and they are putting a programme for him to gradually prepare him for secondary (he is year 5) so I keep my fingers crossed. The one for whom all this is a problem is my husband who is still in complete and utter denial. As far as he is concerned our son is totally normal, what am I going on about? That makes life difficult and communication about our son limited! I think it is because he is in some ways similar to my son and he feels that he has led a normal life so what should there be a problem for my son? Plus there is, as you say Sally, the grieving for the son who will never play tennis, football, play normally with his peers....

 

[bid]

Be gentle with yourselves...it's a funny old time, even when you 'knew' <'>

 

Bid

[szxmum]

Thanks to you all for your kind words and thoughts.

 

Bid your post made me cry (nicely cry IYKWIM) - yes I did know, I knew it was "something" long, long before anyone ever mentioned Autism or Aspergers, I just didn't know what IT was or what to do. Grieving - yes I can relate to that to.

 

Eeeehhhh - I'm an emotional, blubbering mess at the moment

 

Think I'll take a leaf out of Karen's book and have a glass of red wine tonight - or maybe two

[baddad]

as bid says - strange time...

 

give yourself a while for the aftershocks to settle

 

L&P

 

BD

[madme]

Take care. It can be a "shock" even though you "knew". <'> ><

[cmuir]

Hi

 

I really hope that your son can now get some help and support (and you too!). I can totally sympathise. My son is 7 and is suffering from extreme anxiety (he has AS). It's heartbreaking feeling like a bystander watching him not coping. All you can do is be there and love them. You also have to look after yourself too and you need to ensure that you're also supported by someone, whether it be a friend, family member, or here on this forum.

Edited April 30, 2009 by cmuir

[Sally44]

When I got the diagnosis a few weeks ago (you may remember) I wrote to our GP and told him that he had had the dx and he had wasted 5 years of my son's time to progress by continually dismissing me and my concerns. I was very surprised to receive a handwritten apology. It took a few days for dx to sink in (had quite a few tears) and was glad I could have a break during the holidays. Now we are back to normal (it is the same child as before) but at least we have some reference to go on. Tomorrow I have meeting with school and they are putting a programme for him to gradually prepare him for secondary (he is year 5) so I keep my fingers crossed. The one for whom all this is a problem is my husband who is still in complete and utter denial. As far as he is concerned our son is totally normal, what am I going on about? That makes life difficult and communication about our son limited! I think it is because he is in some ways similar to my son and he feels that he has led a normal life so what should there be a problem for my son? Plus there is, as you say Sally, the grieving for the son who will never play tennis, football, play normally with his peers....

 

I think parents have to be very careful with eachother around this area. For example, my husband is not in denial, but he does absolutely nothing in the area of 'diagnosis' or 'school' etc. He contributed absolutely nothing towards getting the Statement, apart from telling me I was doing a good job! For a long time we were a loggerheads about this. But then I figured that my husband is all about 'typical family life' and he just gets on with doing stuff with the whole family that any other family does. And although that has been and can be frustrating at times, I know that I am always aware of 'autism' and reading stuff and on forums like this. If we were both like either myself or my husband, then family life would be totally out of whack. So between the two of us we do get some kind of balance.

So I have just grown to appreciate what he offers to the situation and I am sure my husband would say the same about me - well I hope so!!

[Karen A]

When I got the diagnosis a few weeks ago (you may remember) I wrote to our GP and told him that he had had the dx and he had wasted 5 years of my son's time to progress by continually dismissing me and my concerns. I was very surprised to receive a handwritten apology. It took a few days for dx to sink in (had quite a few tears) and was glad I could have a break during the holidays. Now we are back to normal (it is the same child as before) but at least we have some reference to go on. Tomorrow I have meeting with school and they are putting a programme for him to gradually prepare him for secondary (he is year 5) so I keep my fingers crossed. The one for whom all this is a problem is my husband who is still in complete and utter denial. As far as he is concerned our son is totally normal, what am I going on about? That makes life difficult and communication about our son limited! I think it is because he is in some ways similar to my son and he feels that he has led a normal life so what should there be a problem for my son? Plus there is, as you say Sally, the grieving for the son who will never play tennis, football, play normally with his peers....

 

Hi.It has taken my other half much longer to come to terms with Ben having an ASdx than myself.The penny only really dropped for him when we went on the NAS help course together.We both found it very helpful.But OH kept saying every few minutes ....but that is like Ben.

Gross generalisation I know so do forgive me. But I do think men have a different way of dealing with things.Women are much more inclined to talk to other people and obtain support that way.

A friend was telling me he has started to attend an ASD dads group that meets at the pub once a month.But he did say that even there they tend to talk about foootball a lot. Karen.

 

[frogslegs]

Funnily enough I went this week to a new local ASD support group. Only mothers there and when asked they ALL said that their partners and parents had been the biggest problem because they could not accept the dx. So my situation is obviously not unique but that does not make it easier! You end up really isolated because you cannot even talk about your concerns at home!

Also the scary thing is the number of couples with ASD children where the man has ended up leaving their family 'because they could not cope'.

 

I can imagine men at the support group with the beer, behind the BBQ and talking footie... nothing changes!

[Emma_74]

I must be totally on my own on this one then but when we recieved Connor's dx my husband attitude to him totally changed nefore dx he used to be very hard on him and thought he was just being naughty but as soon as he was dx he knew there was something wrong and he wasn't just being naughty his whole attitude towards him changed he now understands he can't help some of the things Connor does and makes alot more allowences for it.

 

As a result there relationship is 100% better Connor even felt safe/secure enough to have his first meltdown with his dad present - up until then it had always been me on my own.

 

Emma

[Karen A]

Hi.It has taken my other half much longer to come to terms with Ben having an ASdx than myself.The penny only really dropped for him when we went on the NAS help course together.We both found it very helpful.But OH kept saying every few minutes ....but that is like Ben.

Gross generalisation I know so do forgive me. But I do think men have a different way of dealing with things.Women are much more inclined to talk to other people and obtain support that way.

A friend was telling me he has started to attend an ASD dads group that meets at the pub once a month.But he did say that even there they tend to talk about foootball a lot. Karen.

 

Hi.I did think I should say in case anyone missinterprets this.OH has been the most commmitted and supportive partner I could ask for.He is actively involved with the boys.He just has a different way of dealing with things.Karen.

 

[frogslegs]

Sorry I am not complaining about my husband...He is a good person, and he does a lot for his children, taking my son away on trips and things but he just cannot accept the dx and in his eyes his son is normal and is treated normally.

I finally received the final report today and even though I went through everything with Paed and this is just the piece of paper, it is hard. I am so emotional, this is ridiculous!!!! So you see SzxMum, you are not the only one....

[Karen A]

Sorry I am not complaining about my husband...He is a good person, and he does a lot for his children, taking my son away on trips and things but he just cannot accept the dx and in his eyes his son is normal and is treated normally.

I finally received the final report today and even though I went through everything with Paed and this is just the piece of paper, it is hard. I am so emotional, this is ridiculous!!!! So you see SzxMum, you are not the only one....

 

<'> <'> <'> <'> Karen.

 

[frogslegs]

Thanks Karen.