Guilt and the Future

[Kinda]

I'm currently reading the "A Friend Like Henry" which has upset me more than normal, which is due to a terrible feeling of guilt at my failure to spot AS in my son earlier. I know this is a familiar trait with other parents but despite us not being fully aware of the issues he got help from the system which we are very grateful for and he has a job which he enjoys. I just feel had we known more it might have been even better.

 

He's also receiving councselling which seems to be making him more aware that he has to work at being more independant and sustaining friendships and he seems to be working on this.

 

My concern is and forgive me for my ignorance but is there likely to be any connection that any children he may father have a risk of being affected and if so how much of a risk is it.

 

I just feel so stupid asking this question now after 24 years since he was born and I don't even know if its a stupid question.

 

We stopped with only one child because we thought we were bad parents because of our son's behaviour when younger and the book has also has upset me regarding this as that is what Henry's parents suffered from.and it has brought it all back

Edited March 30, 2008 by Kinda

[Karen A]

Kinda I can understand why you feel guilty but I think there is one very important thing to hold in mind.Awareness of AS has increased so much in the last few years.I cannot remember the exact date but think that AS was only recognised as a Diagnosis in about 1980 something .When your son was younger the professsionals knew very little about AS...so it is a lot to expect that you would know.

<'> <'> Karen.

[pearl]

<'> Kinda <'> you come across as a v caring concerned parent, & like Karen says it was less well known in the past. JP is 18 & was one of the 1st tranche of young children to be dx'd when he was 5, but we just got lucky in that it was spotted. You are doing what you can to help him now which is the most important thing.

 

Bad parenting - yes I reckon most of us have been accused of that at some point & can empathise. Again, because JP was my second child, I could stand up to those comments in the knowledge that this child was completely different from my first.

 

As for the genetic component, well I'm happy to be corrected if I'm wrong, but I dont think anything is known for certain about this. We know there are lots of people in our family who are probably on the spectrum, & one has been dx'd a few years after JP, so we reckon there is a genetic component in his AS, but thats just anecdotal, we dont know for sure.

 

Dont beat yourself up, you are doing, & have done, a good job.

[Guest Lya of the Nox]

us too

but we did our best as i assume you did

yes i feel bad sometimes, but my dd will tell me/us she knows we did our best

it dont matter if there is a sen or not as long as we do our best as parents

then what else can we do

dont beat yourself up make the most of now

x

[Kinda]

hi all

 

Thanks all for your comments, passed through it now it just seems to creep up on you every now and then. Reading the book brought back so many memories for me.

 

I think the other issue is that our reason for not having any more children was due to the difficulties we had with our first, linked to being told we weren't good parents.

Edited March 31, 2008 by Kinda

[pearl]

We often said, if we'd had JP first, we would not have had any more. Not because he wasnt delightful, & we loved him to bits, but he was so incredibly different from our first NT child that, had we not had that comparison, we too would have doubted our parenting skills. All the stuff that you learn that works with regular kids just doesnt with an AS child, & that can be very off putting.

[Tally]

Kinda,

 

Remember that it's not just you that missed the diagnosis. It sounds as though you sought help for some behavioural difficulties, and no one noticed it then either.

 

Asperger's wasn't really known about at all until Lorna Wing's article appeared in an obscure medical journal in 1981. It wasn't until 1994 that it was considered a valid diagnosis. When your soon was a child, only the most obvious/severe cases of autism were recognised. Even if you had realised what it was, it's unlikely he would have been diagnosed until quite recently anyway.

 

I think you probably feel bad enough already because of people saying you were bad parents. You really don't need to add guilt to that.

 

It's certainly not a stupid question, and even the experts do not know the answer. But it does appear that there is a genetic component to autism. Some twin studies have shown that where one twin has autism, in 60-90% of cases, the other twin also has autism. You often get cases where one twin has "severe" autism and the other has Asperger's, so genetics doesn't seem a reliable way to predict where on the spectrum a person may turn out to be. It's impossible to say really, but it would be something your son needs to prepare himself for before considering whether to start a family.

[bid]

As far as the question of a genetic link goes, my dad had AS (formally recognised at the end of his life, but we had been sure since my DS' dx), I have a dx of AS and of course there is my DS too. I have two brothers, and one has a teenage lad who was identified by an EP (at prep school) as having 'traits' of AS, ADHD and Dyspraxia, but they don't want to pursue a formal dx, although I know what I think!!

 

So, I will definitely advise all 4 of my kids to think through the implications when they are adults and take advantage of any genetic counselling that may be available then, not for any negative reasons (on my part, although I guess they will have their own opinions) but because I think it always helps to have a good idea of what challenges you might face. When I was pregnant with #4 we had a Downs scare, and opted for a detailed scan to give us a better idea of the odds, not because we would have had a termination, but just so that we could start to find things out, etc, if we were going to have a baby with DS.

 

Bid

 

Just to say, my DS will be 19 this year, and he had his dx at 7...he was one of the first lot of children to get a dx at such a young age. I too was told his problems were my fault, and in fact years later a school nurse apologised for the things a head teacher had said to me when he was 5, and said it was unfair that almost a 'generation' of parents had been blamed

Edited March 31, 2008 by bid