I'm so worried about my lovely friend, she's falling apart over possibility of her ds having autism

[gengis]

Hi all
My friend isn't coping at all, she isn't sleeping or eating, she is unable to concentrate on TV, reading, conversation etc and is very weepy. She spends all her time analysing her ds's behaviour looking for clues and signs linking him to aspergers/autism. She has spoken to her GP who has referred her for councelling (I really think she needs medication). The family have an appointment in September with the paed after a referral from ed psych and he starts reception in two weeks, all of which is proving too much (she also has a 3 month old).

I'm posting here to try and find help for her..she's not a mumsnetter.

I need some positive stories of progress made by other aspergers children.

What can my friend do to help her ds?

What can I do to help her?

The problems he has had at nursery which initiated the referrals to health professionals are mainly social skills, reciting narrative from tv and sometimes playing in a loop. He took some time to settle in at nursery and had some explosive tantrums (I think). This paints a gloomy picture as when I see him with my kids he is a lovely sociable 4 yr old.
Just want some thoughts on this please. X

[Aitch]

i don't know anything about autism but might she also have some PND?

[weebleswobble]

My ds2 doesn't have aspergers but is dyspraxic and has Crohn's. Having a child who isn't as 'perfect' if you like as we had expected can feel like a loss, for want of putting it better.

I found talking to people, probably boring most of them to tears, helped. I found out as much as I could about the diagnosis to educate myself because you don't always get enough information from the health professionals involved.

I think the best thing you can do for her is to listen....it really does help to know that you have someone to offload to.

[gengis]

Thanks..I've phoned her this morning and she's going back to the doctors. I've been searching for information on here but I think she'll just see further proof that her ds is autistic which will make her worse. Don't know what to say to make her feel better.
Aitch you may be right about PND and weeble thanks for your advice.

[Bink]

I've been thinking a lot about your message - I hope the below is helpful.

What you're seeing is nearly universal in parents (well, particularly mothers) just getting to grips with their children having the kind of subtle but deep-rooted problems that your friend's son may have. When I first had concerns about my ds (who's 8 and has dyspraxic traits/socialisation issues at least - no-one can really tell us more, but it's universally agreed now he has "something" and he's at a specialist school) people's general reaction was to tell me to see a doctor - about me, not him!! So please do be really careful about any suggestion that she's imagining things.

Also - people saying "but really he's fine" in a vague general way just wasn't helpful - it came across as dismissive, even if it was meant as reassuring. What was helpful was certain friends who made an effort to get to know my ds himself specially well - working out how to talk to him, especially - so that if we needed to talk about him they really knew what the detailed issues were. Actually, once I knew he was being involved, being talked to, not being treated as slightly odd and alien and different, then I didn't stress about him anything like as much - and didn't need to sound off about him.

[flyingmum]

Your friend sounds like she is on the threshold or into depression and should go and see the GP. The whole diagnosis stage is hellish and can last for quite a while. If it is a diagnosis of aspergers or HFA then all she will be given is some scratty leaflets and told to 'speak to the SENCO' which won't help her much. Her son sounds very much like mine at the same age although mine spins or spun (gr??) things and himself. He had HUGE tantrums (can still do the odd wobbly at school apparantly). But at 12 is kind, thoughtful, imaginative, and has just, completely unsupervised (I'm Mnetting!) cooked scrambled eggs for himself nd his younger brother. He cooked dinner last night as well.

The one mistake I made was reading some fairly out of date literature about autisim and worried myself sick and into depression. It affected the relationship I had with my son. Having had my second NT child (5 years younger) I realise that some of the things that son 1 did that I thought were odd were just things that lots of kids do and that I stressed about it far too much and I really regret that now. Its made me hyper sensitive about everything my son does which he now defines as 'mum having the heebeejeebies' which is so bang on the mark. One thing your friend needs to know is that all aspies HFA are different and to be honest my son certainly does not fit exactly all the criteria. He is, for example, very good at 'reading' people - particularly teachers and can sniff out an incompetent at 500 paces - unfortunatly he doesn't quite deal with it in the right way. If I'm getting grumpy he'll say 'I know your tired mother but you shouldn't really shout like that you know - I am your son' (AHHHHH) Anyway. I still worry myself sick about him but, just like with every other child, things change as they get older and the most important thing your friend has to remember (which I do forget at times) is to be the best mum in the world to her son and that means she needs to be well and strong physcially and mentally to do that. A diagnosis isn't the end of the world its just an entrance into a different world. To paraphrase HE Bates (I think it was him) SN is another country, they do things differently there.

[PatsyCline]

My daughter was an enormous worry to me (bless her) when she was just about to go to school. It was clear that she had some problems (nursery picked up on them quite early), but the paed consultant we went to see was hesitant to diagnose her at such an early age.

I worried that she wouldn't make friends, learn anything, enjoy school at all. I too read a lot about autism on the net and at the library.

My DD is now seven and we got a diagnosis last year of PDD-NOS (not autistic, not Aspergers but related to both). She still has difficulties but over time has really come out of her shell and has done really well academically and at out of school activities. People tell me how polite and lovely she is. She is a very happy child and many of the children I know with SN are also very happy children. I can now see that she should be able to live a normal, happy life which I just could not have been certain of when she was four.

You friend does sound like this is hitting her very hard and I hope that she gets good support - at least she can count on a friend like you.

Patsy

[lourobert]

My son doesnt have ASD but has severe delay due to epilepsy and chromosome abnormality. Its completely normal what your friend is going through. You go through a type of griefing process when coming to terms with your childs special needs, its a rollercoaster and just as she feels she is coping then she will likely hit another trough where her world crumbles again.

I couldnt have though (with my sanity intact) wihtout my family and friends being there for me. be there for your friend to offload and like BInk suggested maybe do a it of reserach yourself and really get to know her son.

It will get easier for her and I'm sure you wish there there was somthing you can do but just being there is invaluable at a time like your friend is going through.

[KateF]

When I had to remove dd2 from school because her "problems" (we are waiting for a referral) were making life intolerable for both of us the last thing I wanted to hear was that she seemed fine. I knew she wasn't and it helped when a couple of people actually listened to me and sympathised with what I was going through. Telling me they liked my child made a huge difference. Feeling that everyone sees her as a pain and a problem breaks my heart. It is very hard to come to terms with the fact that your child's life may be very different from what you imagined.

[Davros]

To me it sounds very likely to be connected to PND and this extra problem is just TOO much. I think she needs help for herself although I do agree that she doesn't need to hear that her DS's behaviour is normal and she has the problem but, with a young baby, she probably does to a certain extent iyswim. To be honest, and don't tell her this, he hasn't even got a diagnosis yet and, although I know that can be a great relief and gives you direction, there could be just as difficult times to come, it probably won't get easier as far as her DS is concerned for a long time I really do think PND could be a major factor.

[TotalChaos]

the donna williams website might be nice for her to read, to get an idea of somebody quite affected who is achieving so much with their life. (think it is www.donnawilliams.net)

To me it sounds like your friend has tipped into depression - possibly due to the inevitable stresses/sleep deprivation with a newborn baby. It's normal to feel very stressed/preoccupied by your child going through the diagnostic process - but not to the extent of complete weepiness/not looking after herself etc.

As someone who is at the pre-diagnosis stage, some of the more helpful comments were such as "oh god, yes, I can see you must be finding this very worrying" i.e. NOT trying to minimise the problem make me feel like a nutter for looking for a diagnosis etc.

[gengis]

Thankyou sooo much everyone for your carefully worded, honest and heartfelt advice. I went to see my friend this eve and the doc has prescribed some sleeping tablets (she's been on nytol previously), the intention being she will be more rational if she's had a full night's sleep! I think she would benefit from being in contact with other mums in the same situation but I know if I sat her in front of my lap-top and MN she'd find more info to confirm her ds's diagnosis and give her more issues to worry about. Riven- you think this will make her worse, I agree as does my friend's DH. Weeble wanted as much info as poss so its difficult to know what to do (and I'm sure your friends weren't bored weeble) But the main message I suppose is to listen and hopefully I will do that. X

Total chaos-I'll research that tomorrow..X

[PussinWellies]

OK, what you actually said in your OP was 'I need some positive stories of progress made by other aspergers children.'

Right then!
Mine was referred at infant school to an ed psych because, as the school put it, he was 'the worst case they'd ever had to deal with' (small village school, so possibly not the widest experience!).

He was diagnosed with Asperger's at 7, which changed the official view nicely from 'child who's difficult at school' to 'child who's finding school difficult for very well understood reasons, which you, the school, now need to address'. Diagnosis is harrowing but GOOD.

He's 11 now and got 5s throughout his SATs, which won't mean a thing to a parent of a 4-yr-old but is jolly good -- especially for a child who sometimes managed to go whole terms without putting pencil to paper.

His leaving report from his primary teacher comments 'He has a small but constant group of friends and I have never known there to be a dispute between them'.

He learnt to sail this summer. On the final day, he took his little sister out for a sail, capsized, got the boat upright without letting go of her hand, heaved her back in and returned to shore -- before us terrified adults had managed to find the paddle for the rescue boat! (Yes, they had lifejackets, but still, I am so proud of him and so very impressed by his calm competence.)

I could go on! Autism /Asperger's (if it is that) does not make a child less human, less loving (might show in different ways, admittedly), or less worthy. My boy likes the explanation that he has a different operating system -- not Windows, like ordinary boring people, but Ubuntu (techie dad, can you tell?).

Hope this helps!

[PatsyCline]

Sorry, slight hijack but Pussinwellies, that's such a great way of explaining things to your son. My DD has started questioing why she can't always 'get' things in the same way as other kids and I've tried to put it into words with little success. I shall try the operating system angle (she loves computers) and see if that does the business.

Thank you!

Patsy
x

[bullet123]

Here is one :

Once upon a time there was a little girl. As a very young girl she frequently ran away from her parents. She threw violent tantrums. She hardly spoke to anyone but her mum and even then she rarely initiated or asked for anything. When she got a little older she could talk more to people - and have conversation - but there were still difficulties. She talked too fast, so nobody but her mum could understand her. She spoke through her mum. She would daydream and verbally stim and she still rarely initiated. She was able to talk about some things, but rarely about what she wanted, or needed. She had toilet accidents because she couldn't tell people she needed the toilet - and sometimes she herself didn't realise the signs until too late. Sometimes she would hear words but not understand them. Other times she would have perfect understanding, but couldn't get the words out. Other times she would latch onto a topic and could not be distracted from it. She loved to stare at a small mark, or a line in front of her and focus on it. She flapped her hands. After a while she left home and for several weeks just ate one slice of toast and a yoghurt every day for weeks on end. She didn't wash properly, didn't realise to comb her hair, so it got tangled and her mum had to cut it out. She couldn't organise herself properly at all. And the years went by and she never ate properly until very recently, she still can't organise her own personal self help skills, she has a degree but can't get a job that utlises that degree unless she works alone, due to her difficulties interacting with people. Today she walked through some dirt despite the fact her husband had warned her about it five seconds before, because she got distracted.
Yes, you read right. Her husband. She got married ten years ago and the marriage is very happy. She has two young lads, one on the spectrum, one not and she can look after those lads with no problems. In fact, her obsession with detail and her wish to do everything correctly meant she fitted into the role of mum quite easily. She goes on parenting forums and has met and talked to other mums. She writes creatively, jokes, laughs and uses her head for trivia and recalling bits of information all the time. She still stims, still has obsessions, still finds it very difficult a lot of the time to express herself verbally, but she's managed to have jobs, get married, have children and run a house.
In case you haven't guessed, I'm talking about myself. So do you see what I'm saying about functioning labels? A person who is completely non verbal might have better organisational skills than me. A person who appears to be more social might get more anxious in certain situations. Never undereatimate someone - and never presume that if a person can do something, that means they can do other things as well. Give them support and help and the knowledge that they can accomplish far more than even they may give themselves credit for.

[twocutedarlings]

Thankyou for writing that Bullet, as a parent of a wonderful little girl, who is currently being assessed for AS, i have found alot of comfort in your words. Thankyou

Gengis, just keep being there for her thats all you can do, your friend is very lucky to have you !!

[PussinWellies]

Patsy -- I pinched it from someone on here a while back (Peachy, perhaps? Thanks, whoever it was) and adapted it to suit him.

I hereby hand it over to you free of charge!

[DrippingLizzie]

Bullet123...I'm in tears reading your post. Got my DS's big Paed assessment tomorrow morning (probable AS/HFA) so am feeling a bit fragile, but your story has given me such a boost. My DS is the most wonderful, fascinating and loving little boy (albeit a bit different, admittedly!!!) but I KNOW - as with yourself - he will be a success in life, despite the inevitable obstacles. I have spent the past year scaring myself to death reading all the doom-and-gloom prognoses on the internet (it's wrong, I know) so it was so inspiring to read your post tonight. All the best. You've already made me stronger.

[Bouquetsofdynomite]

Thank you so much Bullet, ditto DrippingLizzie. In early stages of investigations with my DS, have spent last 6m trying to imagine what life may be like for him.

[gengis]

Thank you so much for these amazing stories, I'm going to print this thread for her to read and even though I know it will make her cry (as it does me every time I log on) I'm sure she will feel much more positive about her ds's future.
X

[flyingmum]

Thank you Bullet. I might paraphrase your post for my son - it would hearten him I think.

One big positive

On monday I was poorly and spent most of the day in bed. My Aspie, dyslexic, dyspraxic +++ other stuff 12 year old looked after his younger brother beautifully, unsupervised cooked their lunch, cleared up, made sure they weren't too loud. The other day he cooked risotto himself from scratch for our dinner - all I did was put the oil in the pan and chop up the chicken.

I'm very proud of him.

[Aefondkiss]

it is so good to read this thread, having a tearful day, but this thread is great

my ds is on the referral/seeing paed soon and I am very weepy/heartbroken just now... though I don't have a baby... I am getting a bit concerned for myself... cannot talk to anyone about ds without crying....

I just feel overwhelmed, but it is so good to read a thread like this, bullet thank you it is heartening to read your story...

[tinky1971]

Hi

my youngest son was diagnosed with autism when he was 2 was expecting it but still comes as a complete shock, put so much pressure on me and hubby we split (back together now)

please tell your friend it is not the end of the world just the begining of a completly diff one which we learn new things everyday. Josh is now 5 and a lovely boy on good days and damien on bad, he goes to a special unit in a mainstream school and has the reading ability of a 10year old. Im not saying it wont be hard for your friend but she will get good days mine was when he was 3 josh couldnt talk till then and he said I love you mommy my heart broke.

please contact me via email and if your friend needs anyone to talk to im there because no one can tell her what it will be like as all children with asd are different but i can be her friend if she needs me.

[kay1981]

Can I ask, did any of your children with autism have the MMR jab?

xx

[Dinosaur]

kay, if you are looking for views and info on autism and the MMR jab, you could do some searching in teh old posts as it has all been rehashed on here many many times.

I think in a nutshell most children will be fine if they have the MMR but do be careful if you have a history of autoimmune disorders in your family.