Do I tell my son he has aspegers?

[Costy]

My son has been slightly 'different' all through school. He was fine in early school, and had friends round, but I didn't really notice any difference in him as he was my first child. When my second came along, it became obvious that something wasn't quite right. He's got slight dyslexia, and has always had a statement for 'specific learning difficulty' which I think is a really woolly, unhelpful term. In around year 9 at school, 'displays Aspergers tendencies' was added, which upset me terribly, but in truth I always knew. Again, this is a very wooly term, does he have Aspergers, or not? He hasn't actually been diagnosed, as our educational psychologist seems fond of not committing herself to anything, and using these wooly terms, so I now have a bit of a problem.

 

He will be 18 in March. He did reasonably well at school, he excelled in chemistry, physics and biology and got B, B and C for these, and was due to go back to sixth form to take A levels in each. However, due to a mix up over his other results (he got E in English and D in Maths) on enrolment day, he was refused entry to sixth form. He enrolled in the local agricultural college and is doing three years in an animal care course (which was what he always wanted to do). Three weeks into this course, his school called and said that there had been a mix up and they wanted him in sixth form, but he didn't want to go as he liked college. Ho hum.

 

All through school, he did details of school trips from me, I only know now that they existed because his younger brother goes on all of them. He has never had any friends, but will tag along sometimes with his brothers local friends. However, they tease him, and he can't cope with it, and it wounds him. Example, he is rubbish at sports, but I encouraged him when his brother and friends went to play tennis the other day. The other boys filmed his attempts on a phone, laughing, and he was upset by this and came home.

 

He behaves inappropriately with his brother, flicking his face, waving hands in his face, saying hurtful things andtrying to embarass him constantly, so he won't invite him anywhere any more. Consequently, he sits on his own in his bedroom, every day, on his Xbox, with the curtains closed, and it's killing me. He says he's happy, but I know he would love to have some friends (he once asked me when he was a lot younger if he would ever have a best friend), but the only people he speaks to are on the xbox. He has a sunday paper round which I organised for him which brings him some money every week.

 

I feel I should tell him why he's in this situation, but don't think I can without breaking down. Also, who am I to make this diagnosis? No one else has, it was just hinted at in his statement, what if he hasn't? Is he actually in this situation because he IS Aspergers? That has never been confirmed either, so if I tell him he is, and he isn't I couldn't live with myself. What difference would it make anyway? We have brought him up exactly the same as his brother, never treated him any differently at all. So if I tell him, what difference would it make? The issue going round in my head is that he could possibly meet up with other aspergers people and have a bit of a social life, but would he? He thinks some of the people in his college are 'odd' but they are people with learning difficulties, and apart from social awkwardness, he really hasn't got any other difficulties. We have never ticked the box on any of his course application forms that says 'do you have an autistic spectrum disorder', because we can't be sure he has.

 

I'm hoping he meets some new people at college in Septemer when he starts the new part of his course. He met one lad at college last year and got on well with him, he came over for my son's birthday, but after an arranged sleepover at this lad's house where there were two girls were invited, he hasn't seen him since. I have no idea what happened, and don't want to.

 

So, do I tell him, or do we carry on as he is. After all, the rest of the world are not going to know he's aspergers (if he is) and he will have to deal with that all his life.

 

Any kind of help, reassurance, or advice would be greatly appreciated.

[baddad]

No, you shouldn't tell your son he has Asperger's because if he isn't diagnosed it wouldn't be accurate to tell him that.

 

Who added 'displays Asperger tendencies' to his year nine statement, and why? What were they? Did they bother noting them down and how they applied to the dx criteria and did they look at other explanations for those behaviours? A learning disability and/or dyslexia would almost certainly produce some behaviours that could seem aspergers related, but they would be learning disability related and dyslexia related...

 

I think the starting point would be to discuss your concerns with your son and talk to him about the 'symptoms' rather than what you think those symptoms might mean. You could then use this as a starting point to approaching medical advisors who can look into the issues you've identified - either via the ed-psych (if he/she is still involved with your son) or via referrals from your GP. The fact that your ed-psych is a fence sitter is a good reason for seeking a second opinion or further input, but it's certainly NOT an appropriate reason for offering your son your own 'home' diagnosis, particularly in any way that implies a level of authority or accuracy. Personally, I would be loath to suggest mentioning AS in any way until professional input indicates it as appropriate, because if you look for 'AS traits' in anyone you will find them. Everybody has 'AS Traits', because they are perfectly normal human traits. The difference is one of degree, and if focus is 'pulled' so that only AS traits are considered then the degree to which someone appears AS will fluctuate accordingly.

 

Please appreciate I'm not making any judgement whatsoever about whether your son is/isn't, might/might not be on the spectrum. I'm just offering my opinion to your question, and the further observation that if you go looking for something chances are you will see it.

 

Hope that's helpful

 

L&P

 

BD

[Costy]

Personally, I would be loath to suggest mentioning AS in any way until professional input indicates it as appropriate, because if you look for 'AS traits' in anyone you will find them. Everybody has 'AS Traits', because they are perfectly normal human traits. The difference is one of degree, and if focus is 'pulled' so that only AS traits are considered then the degree to which someone appears AS will fluctuate accordingly.

 

My thoughts entirely. The ed psych put the comment on the statement. His statement has now been withdrawn, so I am told, as he is no longer a pupil at the school where it was issued. When I was at school, there was always a 'different' kid, or a 'loner'. Rightly or wrongly, that kid now has a label, my son is that kid, and I don't want to label him unnecessarily. I should add that we live in a small village in the welsh hills, he was one of only two boys in his school year, and he and the other boy are like chalk and cheese. He was bullied by the older boys in the school, and has no peer group in our community. He is the only 17yo boy in the village.

 

I have also noticed that he behaves differently when not in mine or his father's company. He does voluntary work one day a week in a local animal rescue centre (he wants to work with animals eventually, says he gets on with them better than humans), and when I went to collect him one day, I heard him introducing a rabbit to a young girl and telling her and her family about caring for it, and handling it, he didn't know I was there. He never speaks so much when we are around, but again, this isn't unusual teenage behaviour. He will not let me touch him, and has not since he was around 9 years old. He has no affection for anything but our dogs and cat. I asked him once if he hated me, and he replied 'I don't hate you, but I do dislike you', and he can't understand why I would be hurt by this.

 

Anyway, ramblings over, I have never discussed this with anyone, not even his father. Our younger son is a successful sportsman, very academic, and is a competent and successful actor. This I feel has led to some understandable jealousy, and has given his father (who is in complete denial about any problems whatsoever) a focus for his fathering role! He finds it difficult to be a good dad to someone who doesn't want to do anything or go anywhere, and doesn't care how he smells or looks. Perhaps I am overreacting, but I do appreciate anyone spending the time to read my ramblings.

[Enid]

well I agree with baddad, (good grief!) who on earth!!! would put on a statment had aspergers tendancies, it is sooo unprofessional, but that is water under the bridge now, personaly I am not sure how the label would help him at this stage, I am struggling with this for my 9 year old, I think it can make a child/teen/adult complacent, if thats the right word. and use it for an excuse. for their behaviour. its too late now for a more considered reply! but my advice is, if in doubt dont; my older son has autism, and there is really no doubt about it at all, thats the difference, wheras my 9 yr old, is quirky, but bright and wonderful, I dont think it would help him at all to have the label. anyway, late now, for me; so will leave it at that for now. good luck and keep strong. x

[baddad]

Ouch!

Costy, can I add one other observation regarding your last post, and I really hope it isn't one that will offend but that's taken as an honest observation from someone who has seen exactly the same phrase on these boards a million times, and has heard them uttered by almost 100% of Mums speaking about Dads at any gathering of parents of autistic children...

 

This I feel has led to some understandable jealousy, and has given his father (who is in complete denial about any problems whatsoever) a focus for his fathering role!

 

Dad's do often have a very different perspective from mums on their children. It doesn't necessarily mean that dad is 'in denial', any more than it means that mum is 'projecting', 'over-anxious', 'over-protective' or 'seeing things that aren't there'... In most families each parent plays a different 'role', and while that's less black and white these days than it used to be, the roles, consciously or subconsciously, and the implications of historical values surrounding those roles (i.e. the parent's own upbringing) can provide very different sets of perspectives on the same issues.

 

From a dad's point of view (and I've been dad and mum to my son since he was six months old and am a bit 'stray' anyway, so can see both sides of the coin better than some) I can see the potential in the dynamic you've described where a mother's protective instincts would come to the fore: One child who was a very high achiever and didn't seem to need her while the other seemed to be struggling in many aspects of his life and did need her, etc etc etc.

 

While it is entirely possible that dad could find communication with your son difficult (because he's not the 'alpha male' type your first son is) and that could cause some difficulty it could also be that dad recognises your sons reluctance and responds accordingly. He might feel that pushing him to go places he doesn't want to go and do things he doesn't want to do is intrusive or pushy, and may well not even notice - or possibly accepts as 'normal for many teenagers' - that your son's a bit of a scruffy soap-dodger!

 

Another thing to consider is that maybe dad sees things in aspects of your son's behaviour that you don't see - i.e. the 'dual nature' that emerges depending on whether you are or aren't around, and the potentially controlling behaviour of hurtful remarks made to a concerned mother who is seeking reassurance (because very few autistic people, in all honesty, would fail to realise it was hurtful to say 'I don't hate you but I do dislike you' to their mother, regardless of what some might say ).

 

Sorry, I've taken a long time answering one specific aspect of your post, I know, but I did want to do my damndest to reassure you that I wasn't 'having a pop' or that my reply was just some sort of male solidarity thing...

 

I still think the advice I offered in my first post is good advice (and thanks for the thumbs up, enid!), but I would add to that now by saying that I think talking to your partner about your concerns - both for your son and the father/son relationship - may well be an equally important part of any solution. I'd also suggest, if you can, taking a 'step back' from the situation and trying to see things from an outsider's perspective, because being any sort of parent, mum OR dad, can leave you at a vantage point that makes it impossible to see the wood for the trees.

 

Hope that's helpful

 

L&P

 

BD

[cmuir]

Hi

 

Difficult one. If your son does in fact have Aspergers, but hasn't been professionally diagnosed due to reluctance to commit on the professionals part (for 'political' reasons), that's a great shame in my view. It took a couple of years for my son to be diagnosed and some professionals were emphatic that he didn't have Aspergers, some sat on the fence and some were sure he did have AS. I'm not expert, but going from what I'd picked up about AS I as sure I could be that my son could have AS and pushed for the professionals to commit one way or another (my son's behaviour was far from normal and I wanted answers). Eventually, by sheer chance the name of a well respected NHS ASD specialist popped up and I asked that she see my son. She read all background reports, met R and carried out an ADOS before finally officially diagnosing him with AS. I firmly believe it made a massive difference to me (I was told by my GP and HV that clearly I wasn't coping being a first time mum and needed to stop working full-time – finger pointing of what?!) as I desperately wanted to be able to access support services for R that weren't available to us without a formal diagnosis. More importantly, I told R that he had AS a few years ago emphasising positive aspects, but also explaining why he finds some things difficult, etc. I firmly believe that being able to explain (not excuse) issues has helped him. I have to be honest though, had R not been diagnosed, I wouldn't have told him anything. In Scotland, Educational Psychologists don't diagnose children, but rather observe and highlight that there may be specific issues. It's specifically the role of a specialist consultant who usually enlist other professionals, e.g. SALT, OT, etc and also seek reports from teachers, HTs, etc. It's very much a team effort, hence the reason that a diagosis can take so long. Indeed, whilst I found the diagnostic process extremely emotionally draining and frustrating at times, I appreciate the importance of a thorough assessment and the right diagnosis. Is it possible that you could gets the wheels in motion and have your son properly assessed. In which case, it's likely you'd have to explain why (also, given that your son is 18, the decision would ultimately be his).

 

Best wishes.

 

Caroline