Help! Scared about ASD appointment!

[rabbitstew]

Having realised I was inadvertently trolling on politics (don't ask!), I was hoping I might get some supportive advice from people who might understand where I'm coming from. Am I getting abnormally stressed and obsessional as the appointment looms, by being unable to stop having thoughts going round in my head, night and day, about whether my ds really has a problem, whether I am the cause of his problem as a result of my behaviour, and whether I am stressed not just because of this but because maybe the world isn't a very nice place? Did anyone else feel like this?

Can anyone come up with advice on how they went about reducing the stress involved in having to talk about their children's weaknesses all the time? I just feel that if I talk about them, it makes my ds sound unlovable, but I totally adore him. Maybe I identify with him too strongly and, because I see so much of him in myself, can't believe he could be autistic, because I can have so many autistic traits without being autistic.

Is there a difference between anxiety on its own and anxiety caused by an ASD? I feel that I only behave "autistically" when I'm highly anxious. Why can that not be the case with my ds?

Help!

I can't truly understand your situation because I've never been in it (no dc's). But I do exactly what you're doing and am medicated for it - you're winding yourself up in a blizzard of all the worries and niggles until they become one huge insurmountable mass, instead of individual things to deal with.

The point I can and will counter is that SNs are NOT caused by parenting. Yes, there are different strategies that a parent can use that will help their DC, but love is the most important strategy there is.

Autism does not mean unlovable, I have been fond of all the children, young people and adults I have worked with who have autism. And I know from working in the field that it is very possible, especially with us anxious types, to over-analyse. Every single person ever has some traits that put them on the spectrum. If it doesn't hinder you in funtioning within society, you don't need a diagnosis.

Stay strong; whatever you do will be the right outcome for your son and family.

Thank you, pruplepidjrobin.

One other question: my rational head (the one I have when an appontment isn't coming up) says that my ds doesn't need an awful lot of intervention to help him function normally and that this intervention should not actually need to last very long. But I am afraid that if he doesn't get a diagnosis, then he won't get any intervention at all and will therefore carry on not functioning normally.

How much helpful advice can I expect without a diagnosis? I believe that the clinical psychologist who has seen my ds actually has a pretty good understanding of him - will a little bit of advice from her be enough, or does he actually need a statement?!

And I realise no-one can answer that for me with respect to my own son, but maybe could advise on how much difference a diagnosis makes in reality. ie I know my son probably has mild aspergers, but so mild that I'm not sure a label would help, as it might lead ignorant people to assume things about him that aren't the case and, eg, not employ him in the future.

Hey rabbit
The whole diagnosis process is riddled with upset and guilt I think. It almost seems as of we are destined as mothers to find a way to take the blame for anything negative in our childrens lives.
I worried myself sick for ages until I realises that a) I would never know b) that even if it was partly due to me then what good would that knowledge do and c) replacing any bad parenting I may have exhibited earlier in his life, with anxiety and guilt later in his life was not much of an improvement.

Ds2 needed his assessment and diagnosis because his needs are severe and he attends special school. If your son has milder issues then diagnosis may provide different types of help
I think children with milder issues benefit from understanding why they are different.

Have to whizz - will post later

ps there is also a little bit of me that thinks that all my ds really needs is a bit more time. He is already in a fantastic school that is working very hard to understand him and he is making huge progress. I guess I am happy with the situation, but it is the school that wants to speed the process up with a bit more help. Would refusing a diagnosis be unhelpful for the school?

Thanks pagwatch. The unbelievably annoying thing is, I had been through the whole process of realising that wondering how much you are to blame isn't helpful, and then the whole can of worms was opened up again when I agreed to having my ds assessed by a psychologist. Now it's back to worrying that I was just burying my head in the sand.

It is very annoying that last week I was the happiest and most positive I've been in many years and this week I'm back to square one again! I'm in mourning for last week's attitude.

At least this time, I think, once I've got the appointment over, I will quite quickly get back on an even keel.

ps I think I have a good grip on why my ds is different (ie I know he has very mild aspergers!!!!!).

pps I think, since my ds is now such a normal little boy at home that I am now actually being a very effective parent. The problem is only with his behaviour at school, but his behaviour is not the fault of the teachers - they are using very appropriate strategies, they just seem to have lost faith!

Try not to stew too much Rabbit. It is hard to know what to do for the best and you have to have time to find your feet around all the processes. Take one step at a time and things will get better. I don't have a dx for my ds (suspected AS/HFA) but I have just obtained a statement for 22 hours support - it is all about need. Ds has gone from having very little support to being given all those hours and I am slowly realising that it is because he must need it - although at times he seems NT. All you can do is get as much good advice as possible (this board is great)and do the best you can for your ds.

(Good, normal service resumed )

fightingthezombie - that's exciting to hear. Is it really possible to get a statement for your child's current needs without a diagnosis? Or is that going to be very difficult in the current financial climate? (Mmm. Another reason, maybe, why I started making panicky posts on politics!!!!!).

I have written down all my thoughts on why my ds has ended up where he is, now (ie not having made as much progress as he could have done); what I perceive his continuing difficulties to be; why I do not think that he merits a formal diagnosis, but what help I think he nevertheless needs and deserves. I was planning on giving that to the paediatrician and psychologist and asking them to read it before they make any decisions. I felt this was a way of gaining some control over the process and ensuring I get what I want, rather than having unwelcome interventions thrust upon me and my ds. Hopefully the psychologist won't think it's me trying to do her job!

Do you think this is constructive?

I would list all the difficulties your ds has but would not say why you think he doesn't merit a formal dx. In our case we are adamant ds should have a dx as are other professionals but in the current climate and in our area dx's seem to be like gold dust as with one you can access extra support which costs.
Popping out now but back later.

But what about the possibility of the diagnosis being helpful now, but a millstone around his neck, later? It's just that he already has an EDS diagnosis (connective tissue disorder), which I don't entirely believe in but pushed for in the hope it would get me up the waiting list for OT, but it actually made no difference. He now has a diagnosis for a condition that could, potentially, cause problems later on if, eg, the Government partially privatises health care (eg not offering free cover for his needs, because he is already known to have them!!!!!), or if later in life he personally would like to have private health care and opt out of the NHS.

Is it possible to remain in the State sector but pay for private support to come into the school to meet your child's needs, as acknowledged by a psychologist? Would that sort of help be prohibitively expensive?

And is it possible to replace his EDS diagnosis for an aspergers one, rather than add to the list?! That might make me a bit happier!!!!!! How much red tape do you have to go through to get rid of a diagnosis you've already got?!!!!!!

(ps I don't believe in the EDS diagnosis because my ds doesn't dislocate nor does he have pain, and I know that many children with aspergers have low muscle tone and hypermobility).

fightingthezombies - I've taken out my request for not having my ds1 diagnosed. I guess that is a step too far, given that it is supposed to be the experts' judgment! I've also directly asked the question as to whether my ds would benefit from more 1:1 support at school than the school can currently provide...

Would still love someone's views on whether it is possible to replace one (physical) diagnosis for another (developmental)...

And thank you so much for all the support so far - it is such an overwhelming relief after years of skirting around the issue on mumsnet to feel able to ask for sensible help, rather than dealing with my problems by trying to help others or cause trouble in "Politics"! I think I might even get a good night's sleep, tonight.

I guess if I were you I would try to go along to the appointment with an open mind. I expected a dx but didn't get one and dh didn't expect to get one at all! But,having met 2 EP's that both suspect HFA we feel there is 'something' there. We are considering whether to get a second opinion now or wait a while to see how things go with a lot more support. Now we have a sm relatives have said that he will be labelled and I can kind of see their point. My argument is that he has a label already for being the 'naughty boy' or the 'rude boy' or the 'odd boy'. I feel a dx will help in explaining his difficulties rather than feeling that people think you're a bad parent. A dx can be very helpful in accessing support e.g we are often asked if we have thought about joining any support groups but we don't feel we can go anywhere without having a dx. I presume your ds is quite young so the more help he gets now the better.

My ds1 is just over 6 and a half. I think my dilemma is partly like yours: I think I am probably quite open minded, but on the one hand I have my parents very strongly opposed to my ds1 being labelled (and my dad is a dr, so maybe he knows something I don't!); and the school very much in favour of my ds1 getting a label in order for him to be better understood. I think I've been a bit too deferential to my father's opinion in the past and find it extremely difficult not to defer to his judgment.

One thing I think I am lucky with is that ds's paediatrician has known ds1 for several years now, so it's not as if she hasn't seen this coming, and she has a reasonable understanding of where we are coming from and reasonable knowledge of my ds (albeit he is embarrassingly obstructive when he sees her); I liked the psychologist when she saw ds1 for cognitive testing, ds1 warmed to her and the school were impressed by her; and I really trust that ds's school want to do what is best for him, rather than what is best for them. So, I suppose I shouldn't really be that worried that everything will go tits up!

I hope you get what you need in the end, fightingthezombies. How old is your ds?

It's hard having to present deficit accounts of our children all the time. I guess I'm reconciled to it, because it's the means by which we can get the best provision for DS2. But it does tie you up in knots. Sorry, that's not overly helpful, but I can relate to what you're saying.

Rabbit my ds is 10 now so I've had to battle to get statement done before secondary or he would be in big trouble.

Rabbit,
I think that the resistance to a 'label' in our parents can come from the fear of stigma. Previous generations were incredibly negative about any matters that seemed related to mantal health with little ( general) understanding that issues have a huge range of reasons and symptoms - it is a fear of the unknown I think.
With people like Daniel Radcliffe talking about his dispraxia and people with asd issues much more present in popular culture I think this is changing a bit.

You also talk about interventions being forced on you that won't help. Tbh most of us are fighting for support...there is not a huge swell of therapists waiting to pounce on unwilling kids.

Also at 6 your son is quite young but as he gets older actually having a diagnosis may enable him to understand his behaviours better and modify them or adapt a little better.

You could post again and ask parents of children with aspirers how ( or indeed if) their diagnosis helped .

Threads shift through on here quite quickly so rather than refreshing one thread do post again ascyour questions and thought evolve.

As I have said, ds2 is pretty severe so my experience may not be relevant to your situation so feel free to ignore me ....

Hope you slept better last night .

Aspergers .... Sorry - my iPad autocorrect thing is bloody annoying. But I would rather post in bed and have shit spelling than go to the computer room..too cold .....

Thanks, pagwatch. I slept really well, thanks (until ds1 came into my bedroom asking to do jigsaw puzzles, which is actually a huge step forwards, as his biggest problem is severe avoidance of anything he deems to be difficult, and jigsaws have traditionally been included in that list, along with talking to other children and adults!!!!).

Thank you for chasing me into the right forum! I can't believed how quickly it has helped me feel calm again. I feel prepared for the assessment, now, whatever the outcome.

Oh that is good , sleep helps!

Let us know how the assessment goes.
Take care

Rabbit.. Try not to worry.. Ds has an ASd/AS label .. Or I'll call it a 'give me a break' sticker :)

there is no reason he has to have this follow him about when he's an adult.. but it will be there if he needs to use it.
At school things should be on a needs basis.. But a lot of the time a dx is handy.. As there is less arguing about needs.

What it does do is highlight areas of strengths that may help compensate for the areas of weakness... We found a few out that we hadn't picked up on. And as ds has become older they have started to show through , the more his peers move away from him.

Thank you, TheArsenicCupCake. I think maybe Society's current woes are probably increasing my concerns for my ds's future, to a degree greater than necessary!

You put it a very nice way. I actually think my ds has far more strengths than weaknesses, which I suppose is another reason why I find it hard to contemplate his need for a diagnosis, since to most people a diagnosis of something implies there is something wrong with HIM, rather than the way people see and treat him (ie that his weaknesses are all consuming, or at least greater than his strengths).