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Son just diagnosed with aspergers

(28 Posts)
Sjenner77 Tue 23-Jul-13 15:05:28

After many years we have finally received a diagnosis of Aspergers for my 9 yr old son and I am so surprised by my response.

I have always suspected / known that he had this, and have pushed and pushed to advocate for him so he will be diagnosed and receive the support he needs.

I thought I would be so relieved by the diagnosis, but instead I find myself feeling sad and angry which is confusing.

I also realise that having spent years concentrating on the diagnosis, I have not spent any time thinking about what happens now! So I feel a bit lost....

For reference, my son is at the mild end of the spectrum.

I'm also upset by my family's response, all of whom appear to be minimising the situation (in an attempt I think to show that they love my son regardless??), but I feel that no one is taking it seriously or understands what it means and they think I am making a fuss over nothing. I think this is just me feeling sensitive right now though.

Anyone who has been through similar- I would be so grateful for some support or advice right now!

tacal Tue 23-Jul-13 18:23:56

Hi sjenner77, I have not been through this yet but I can imagine feeling exactly like you do now if my ds gets a diagnosis. My ds is having his first assessment on Thursday.

I think what you are feeling is a very normal reaction to something like this.

I am sure you will get lots of good support and advice on here.

Best wishes x

Levantine Tue 23-Jul-13 19:00:31

Hallo, I can't give you much advice really, but I can hold your hand, my DS has his ADOS in a couple of weeks and I am quite nervous about how I will feel (assuming we get a diagnosis). So I can really relate to what you say.

FWIW I would just close your ears to what your family say and just talk to people who are able to offer some support. For me that has meant spending less time with some friends and more with others. Also being put in touch with someone with a son with autism has made a big difference. I know you say your son is only mildly affected, but perhaps it would be helpful to find a local support group? I found one through NAS though I haven't been able to go because they meet in the day and I have a 2 year old.

PolterGoose Tue 23-Jul-13 19:12:12

Totally understand, after years of pushing for assessments and arguing that ds has Aspergers because... Getting the actual diagnosis was a bit of a damp squib. I think, for children who can seemingly pass for NT having formal dx really helps. Ds has learned a lot about his AS and loved the various Kathy Hoopmann books.

In terms of family I've ended up falling out with mine who subtly blame my parenting for ds's difficulties, I just don't have the time or inclination to deal with anyone destructive, critical or unhelpful.

starlight78 Tue 23-Jul-13 20:28:27

Hi
I have a son aged 10 years old who had been diagnosed a year ago. It was pretty tough at first, we had to convince the school to do psychology assessment and then he had the formal diagnosis through cahms. The diagnosis itself was a huge relief as I did not have to convince every person that I met that my son was different. A statement followed shortly after diagnosis, with band c support which is still ongoing.
From a personal point of view, I really feel for you. Although Aspergers is classified as a mild form of Autism, in my experience, it can be quite severe in itself. We as a family are having to deal with frequent outbursts and tantrums and I dread the weekend and holidays. My son broke up early today for the summer holidays, and already he has had over 4 meltdowns. Simple things can set him off and he requires help throughout the whole day, i.e, wont go into his bedroom if the light is switched off, wont get himself a drink for fear of germs etc so I have to wash his glass etc.
At least you are past the diagnosis stage, now you can focus on the type of help that your child needs. Good luck!

PolterGoose Tue 23-Jul-13 20:39:27

Although Aspergers is classified as a mild form of Autism

It really isn't a mild form of autism. Aspergers is autism with 'normal' or above IQ and 'normal' speech development.

Ineedmorepatience Tue 23-Jul-13 20:59:35

I know exactly the feeling you are talking about, it took 3.5 years of assessment for my Dd3 to be diagnosed. I spent hours reading, chasing up appointments, writing letters, arguing with people and then suddenly she had the diagnosis and I didnt know what to do. I felt almost empty as if searching for the answer to our problem had been ruling my life.

It gets better believe me. Getting a diagnosis for Dd3 has been very positive, I still have to fight to get her the support she needs, I still chase up appointments and write letters but now it is official, she has Asd end of.

My family were in denial for years and still like to think she is naughty sometimes but I dont care. I know she is who she is and I just try to get on with it.

You will get through this, well done for not giving up and keep coming on here for support and great advice.

Good lucksmile

Swanhilda Tue 23-Jul-13 23:23:09

I agree with everyone on here! When you are pressing for a diagnosis you feel pro-active; when you have the diagnosis you can feel "stuck". I think I am still finding it difficult to process almost three years later - it is almost as if I can't remember who that person ds2 was/is anymore and everything is the "label". However, I think this is just a stage, and the hard work of actually helping ds through his personal challenges is the real issue .
This week has been lovely really, ds2 has been rowing and caving, and said it was best fun ever. This was despite a few meltdowns over sweets and water bottles. I am remembering what a fantastic zest for life ds has, and that is all part of his Aspie character smile When ds2 is happy his happiness is extraordinarily infectious.

Apart from all that, the diagnosis has given me a chance to really pinpoint:
sensory issues - letting off steam v getting overwhelmed
how to deal with frustration and impatience
his fears and how to lessen them
planning - not throwing him into situations without warning
straightforward direction rather than complex explanation
encouraging his responsiveness and 1:1 communication rather than expecting him to multi-task socially

HTH. Ps. I learn new stuff every day!

Sjenner77 Wed 24-Jul-13 10:23:16

Wow! Thank you all for your amazing replies I am so grateful. It is incredible how much difference it makes to find you are not alone and that others have had similar experiences and understand how you feel!!

How did anyone manage anything before the internet! It must have been so lonely.

I think part of the problem has been caused by getting the diagnosis just as term ended so it feels like a long wait until September to really get things going.

Sjenner77 Wed 24-Jul-13 10:24:45

I wish you all the best of luck with your assessment - it is a minefield but we will get through it, as will you! Lots of luck!

Sjenner77 Wed 24-Jul-13 10:25:50

I'm not sure how to reply to individual messages and quote them!

Swanhilda Wed 24-Jul-13 14:56:36

we too had a diagnosis just as term ended and had to get through the holidays without any "guidance". However you might find you get not much more official guidance than you can rustle up yourself by astute reading etc.

Ds2 (my ASD son) had a lot of tantrums during those summer holidays when he was 9/10. Most of it was round social occasions when he found it difficult to fit in, got angry and fixated on things he wanted to do (ie watch Formula 1 or play group games His Way). It was not easy to arrange playdates for him for example as not many people saw him as an easy child to invite round to their house. He also required a lot of extra maintenance from me as a the parent organising food, tidying, hygiene as he would tune out from a lot of instructions, or not be ready, get angry with another sibling for not sharing, feel aggrieved etc..

Looking back I needed to:
make a lot of holistic changes...ie: lots of fresh air, swimming, walks in countryside, running, physical release sort of outings, some visits but spaced out (see below)
make day very structured but very simple...ie: only one pressurised outing or activity every two days or so
make time to pay him lots of attention which then calmed him and led to less trouble later, and less time spent by me sorting out tantrums
go easy on school work but make it a very structured game for 10 mins a day if at all.
RELAX and ENJOY Him in the way he needed rather than imposing on him ideas of how you thought children should behave at that age - ie: not expect him to just "manage"
Conversely encourage independence in small ways, not micromanaging his existence. They grow up a lot this holidays, and that is part of their frustration with not being able to do things like other NT children.

Sjenner77 Wed 24-Jul-13 16:24:58

Thank you for this reply - I am learning that doing things 'his way' definitely makes life easier, although I can't help feeling a bit annoyed sometimes!

Poor little thing : ) -he is so blissfully happy when we just accept as he is, but it's days when I'm tired, ill, stressed etc when I have less patience (we are all human) that I long for him to just manage for a day or two...this is for me to learn to deal with and get coping strategies in place.

moremerlotplease Thu 25-Jul-13 00:51:14

Hi sjenner77

I totally, totally understand how you feel.

DS (4) was dx on Thursday.

I knew he was ' different' from the time he was about 2 wks old and have 'known' he has AS since he was about 18 mths/2yrs.

I have been begging for help with him for the last two and a half years. Now, when he seems the most settled he has been (amazing nursery) - though still far far more challenging to support than my other two NT DC - he has had appointments left, right and centre with every professional I can think of!

I was expecting to have to fight (again) for an ADOS when we saw a new paed on thurs, but she said the evidence was so clear that an ADOS is unnecessary. I had to ask her twice to confirm the dx as I was stunned that finally someone has understood how hard he finds things and the amount of work that goes into just getting out of the front door every day.

I have fought, written letters, been laughed at by doctors and playworkers, been told i'm neurotic, been told i don't know how to parent, and cried and shaken with frustration all in the quest to get him diagnosed and his difficulties recognised so someone will see that he (and we) needs help.

So how did I feel when he was dxd?

Definitely relief... that now people will/ should understand that he struggles hugely, even if he does seem 'normal' at times; that he should get help; that I'm not imagining it; that I'm not a crap parent and that now, there is a label I can use to explain to his siblings/grandparents/friends/strangers in the street who really don't matter why he is behaving the way he does.

But also, totally unexpectedly, as I thought I was absolutely emotionally ok with the whole idea, an overwhelming sick feeling that started in my stomach and clogged up the whole of my body, up to my throat, so I felt unable to speak or swallow or breathe. It was definitely a shock to have that reaction.

Luckily for me, DH and I were away for the weekend (the first time in 7 yrs - so lucky timing, I think!) without the children, which gave us both a chance to think things over with the luxury of being away from the immediate situation. The breathing space definitely did us good.

Since we got back, I've noticed I've dealt with the inevitable meltdowns with a lot more patience and understanding. I thought that was what I was doing before, but to actually have had a professional say the reason DS is like this is because he has AS (not because he is naughty, had rubbish parents, etc, etc) I think has given me permission to believe that the way I have been dealing with his behaviour is good, not mollycoddling.

Reaction from friends and family so far has been very mixed. People I thought would be dismissive have been very supportive and shown that they understand DS better than I realised, and people who should know better have said its utter rubbish and there's 'nothing wrong with you DS, is there?' to him (he's 4 and we hadn't had time to talk to him properly!!!!?! Grr!!) No there's nothing wrong with him - his brain works differently and we have to learn to take account of that, you cretin! That's the situation, but thank you for giving him something else to be anxious about...

I had been planning on posting to say thanks to everyone on MNSN who have given support and advice during the last few years. I've been quietly lurking during the last few months but have felt such support and a feeling of being in the same situation that other people have gone through that I don't know what would have happened to my sanity if I hadn't stumbled across here. But as your thread kind of says everything I've been feeling for the last half a week, I'll say it here instead.

Keep popping in here -people know what they're talking about, and someone has always been there before and experienced whatever it s that you're going through.

As for getting the diagnosis just before the holidays - for me I think that's a blessing. I will enjoy him while he isn't so anxious he self-harms til bleeds and bleeds and I will make the most of saying 'no, it's not a school day' and seeing his face light up with relief. And I will indulge his odd obsessions and feel lucky to have the time to really enjoy him before the stress and anxiety of having to spend hours with lots of other children at school kick in again. Yes, he's struggling with the change of routine -I spent this morning walking very gently over very fragile egg shells (and clearing up a lot of mess when they got broken!!). I know it's not the same for everyone, and things are likely to change as he gets older, but right now, I'll make the most of him while he's relatively relaxed.

I hope you get all the help you're looking for and life starts to improve.

moremerlotplease Thu 25-Jul-13 00:52:10

Oops!

What a long post!

Looks like I needed to get that off my chest!

FriskyHenderson Thu 25-Jul-13 02:46:15

I've come to realise since our diagnosis that although it gives us more patience and understanding (most of the time anyway) with DS 'foibles' - it doesn't necessarily mean the same for Other People. So friends and family still think he just needs a clip round the ear, or for us to be firmer, and of course if they had him for the weekend he'd sleep well and eat what he was given, and it's not that bad is it, he could 'pass for normal'

I can only think that it's like we've been on some secret journey of all those sessions with the psychologist, examining every past school report and nursery learning journey, reliving every developmental milestone, and every past episode/example/bad playdate/party/'can I just have a word' with the teacher. No one else has. We've already 'circled the waggons' and have left behind a wake of judgemental friends who thought he was just naughty - I have no wish to go back and proclaim that he couldn't help it, we know why now.

disorganisedmummy Thu 25-Jul-13 13:24:36

Sorry ot hijack the thread,although we haven't got a dx for ds (we're at the very beginning) and we may not get a dx I totally get where you're coming from.Ds was dx with social communication disorder,motor skill difficulties and poor spatial awareness.We have just asked GP to refer him to OT and Child developement centre to be assessed for Aspergers.
We're now 2 weeks into the 8 week holiday and his behaviour is starting to go downhill.Possibly due to the heat and also lack of routine.
I am struggling hugely with finding the right balance of doing enough to keep him stimulated and too much and he goes into meltdown.I also have a veru demanding,active 5 year old ds.They are just fighting constantly and ds1 keeps hurting ds2.
Every little thing he does,I analyse and wonder if it's because of his SCD and other issues.
We also got this dx from the Ed psych just before the hols and I'm not sure how I'm going to get through the next 6 weeks.
Sorry Op for hijacking but can anyone give me any advice or even a hug sad

myBOYSareBONKERS Thu 25-Jul-13 18:57:39

Are any of you in the Northampton area as my ds age 9 attends social groups and day's out with Autism Concern

disorganisedmummy Thu 25-Jul-13 19:20:28

Sadly not,I'm in Essex.

BiddyPop Fri 26-Jul-13 12:25:51

I will be coming back to the thread to absorb fully the excellent advice. But we are 16 months after DD's Dx for HF aspergers and ADHD. I've felt like I was hitting dead ends quite a few times since, as it felt like there wasn't a lot of help to now learn to deal with the specific issues the Dx gave us (like dealing with specific behaviours and discipline etc, and how NT strategies won't work so what is the alternative?).

But I have started to come through that again. I went on a course (run by the Autism Centre in Middletown, Norn Ire) which was helpful, and met a few parents there dealing with the same issues. (As I work FT, the only options available locally were 8-12 weeks for 3 hours a week mid-mornings and I just couldn't do that!). And last week, the centre we attend started the "Incredbile Years" parenting course in the evenings (most there are relatively recent dx's but I am still learning lots too even if I do feel like the mature person in experience terms for a lot of the discussions - not in age though, big mix).

And I have found that the nest of vipers that is MN SN pages has been SOOOO helpful in getting a few ideas for dealing with some things, but also just coming to understand DD's dx better (the raft of reading given to me in the clinic just made my brain melt and swim away!) and why things happen the way they do, what sort of reactions to expect.

And as we've started to understand that a bit better and deal with certain things a bit differently at home, it hasn't solved all the issues, but it has certainly meant that we are dealing with fewer MAJOR problems.

I also told DD WHAT her dx was recently - before then, she knew clinic was aimed at helping her but we hadn't given it a name. So I am going to slowly bring it up at times, mentioning the name and what it means, and letting her ask questions at her own pace. But short conversations rather than a 30 minute "here is everything you'll ever need to know" serious session. (Let alone the hours I could probably talk about it at this stage).

Take it in slow steps, and you WILL get there.

notnagging Mon 29-Jul-13 04:58:15

I'm in exactly the same situation op. I bought 'all cats have Aspergers' as soon as I got the diagnosis on my paediatricians recommendation, sat & read it with my ds. It is a lovely book & really helped us both.

notnagging Mon 29-Jul-13 05:02:40

Lets not get into a definition of the spectrum poltergoose. My son has Aspergers, is very intelligent but has speech problems. Autism is a spectrum because no 2 people with Autism are the same. In our area they do not use the term Aspergers anymore because of the difficulties with labelling.

notnagging Mon 29-Jul-13 05:07:29

Disorganised. Sounds a lot like Dyspraxia to me which my other son has, do start your own thread so you can get some more support.smile

disorganisedmummy Mon 29-Jul-13 08:48:46

Notnagging,I think ds may have dyspraxia too.I have started other threads in the past and the support I have had on this forum has been wonderful.At times I feel like such a rubbish mummy and esp at the moment during the hols as I find it so hard to keep both boys happy.

Interestingly my sister in law has extensive training in Aspergers/Autism and worked with children and young adults for 20 odd years and also worked for the NAS,she has read his EP report and although I haven't pressed her for her opinion she is certain that he has Aspergers although she won't say anymore than that.She together with ds's teachers have been instrumental in getting this far.

We have just received the referral letter to the hosp for an OT appoint and a Paed appoint.

And so the process begins,wish me luck!

youarewinning Mon 29-Jul-13 11:40:33

Hi, do you mind me joining here? My DS (8.11) has his choices appointment at Camhs in September. I have known since he was about 15 months something was different about him. Since about 2 yo I've said I suspect some sort of ASD and then from about 4yo AS.
However, despite the school telling me he has poor social communication (yes, I had noticed!), and needs help with emotions no-one ever suggested I saw anyone.
This year he has got further and further apart from his peers and more and more anxious.
I finally after a fight met the SENCo and her parting comment was "I'd be interested to see what Camhs say" hmm

I'm already thinking it's strange that I really want a dx for DS to receive support but yet worried about what a dx will mean for him.

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