Please or to access all these features

SN children

Here are some suggested organisations that offer expert advice on special needs.

Feeling down, Hosp. Appointment from hell yesterday. 95% sure we have another Aspie on our hands.

30 replies

oldmum42 · 18/04/2012 14:04

This is really long, epic in fact, sorry!

Brief background, family history, of successful but "odd" scientist/inventors who would surely be diagnosed as ASD, had the tests been around then.

Of our 3 teen DS's, one has absolutely no ASD traits.

DS3 (15) has Aspergers's, he self-identifies as "Aspie" is happy to be a bit different (but does have some social difficulties). He is a wonderful young man, albeit one with some issues. We have the expectation of him achieving academically, going to university, getting a job, contributing etc.

DS1(18) is not diagnosed but has all the traits of DS3. We chose not to have him assessed after discussion with the person who diagnosed DS3, who felt that diagnosis would not benefit DS1 in the same way (DS3's very disruptive ADHD type behaviour was less of an issue in DS1). He was so far above his age for academic achievement/ability, that it caused serious problems at school, particularly as he was socially immature for his age. Now at a world class Uni and surrounded by many similar teens, he is thriving and loving it.

Early school was hell for both (up to the start of high school was worst). An awful cycle of bullying (for being different), constant meetings with school, school refusal, Changing schools and constantly having to fight our DC's corner (I mean, represent their best interests during meetings), it was very stressful and wearing, but we did it. Well, we are still doing it for DS3 (15) but everything is falling into place for him now, as a result of the hard work earlier. Neither would have got what they needed from school if we hadn't been pain-in-the-arse parents (almost certainly the view of their schools!).

Now we have DS4, almost 18months. And DH (a GP) and I have been privately concerned about his atypical development for a number of months. Like DS3/DS1 at that age he has lots of words, but they are atypical, shapes/colours/phrases, his first word at 9 months was triangle! He is obsessed with shapes, doors, drawers, locks, handles. He likes to carry bits of string or paper around. He has good eye contact, but so did his brothers (except when stressed). He cuddles, but so did his brothers. He does not point or wave but can follow instruction. He is very active and does not need much sleep. He says Daddy, but rarely mummy.

Yesterday's Hosp appointment was just to check his feet (he is hyper mobile), but the Dr was called away so we had 2 hours in the playroom waiting area and his behaviour was just awful. I was fully trying to engage and occupy him and was not letting him run riot but is was really hard to distract him from what he wanted to do, which was leave, open the doors to the consulting rooms, jump on the scales in the corridor, climb on the furniture. I had a rictus smile on my face as I tried to control him and ignore the judgy-pant hoiking up of the parents in the waiting room!

It really brought home to me, seeing the other 20 or so toddlers who used the playroom while we were waiting, that we are right, he is not like other kids, he's like his brothers. The other kids were sitting quietly and playing appropriately, moderating behaviour when told. DS4 was loud, over-active, intractable despite my best efforts! I have not felt so publicly judged since my other DS were about 11 and I'd forgotten how awful it makes you feel.

Had an "I'm really down about how he was behaving compared with the other kids" chat with DH last night and he agrees that he probably has ASD (DH is involved in toddler screening). We don't want to go down the route of diagnostic testing ATM, DS3 was diagnaosed at about 3 and a half, which is early for Asperger's, and we don't see any point to it earlier than that.

I don't even know why I am posting, but the thought of another 17 years fighting my childs corner, the parents evenings, the phone calls from school, the years of judgey-pants looks from people when out and about with my "spoilt brat" child............... it all becomes a bit WEARING doesn't it? Feeling sorry for my self Sigh.

OP posts:
wasuup3000 · 18/04/2012 14:39

It is not easy but on the plus side you know the system, you know how to wear the tin hat with style and you know with the right support what he might achieve. This is probably more shock and you need to give yourself time to get used to this as being a possibility.

oldmum42 · 18/04/2012 14:45

The tin hat! [grins] must fetch it from the attic and dust it down.

Yes, we know the ropes and know that one way or another, DS4 will be fine, and we will make sure he gets the chance to achieve his potential.

Still, we were kind of hoping all those little warning flags were going to disappear and now we are thinking, no, probably they won't.

OP posts:
AgnesDiPesto · 18/04/2012 14:57

And you know early intervention has come on, at least a little, in the past 14 years. DS3 is 5 and getting great ABA social skills help, so with 13 years to practice before unleashed on the adult world I am reasonably hopeful he will get by.
I do know what you mean though. Awful as it sounds I do sometimes think when DS1, 2 or 3 have kids will they be ASD and will I have to do all this again as a Granny?

SallyBear · 18/04/2012 15:03

No they probably won't, but you are so much better prepared for it than all those first time Dx parents out there. It's just shit that he probably isn't NT, but I bet he makes your heart sing every day. My Aspie's first word was Fish. I thought that it was cute at the time. It's still cute Grin

SallyBear · 18/04/2012 15:04

Xpost with Agnes! Oops!!

AgnesDiPesto · 18/04/2012 15:12

The first word DS wrote was vtech at age 2Grin

Ben10NeverAgain · 18/04/2012 15:17

You can still feel sorry for yourself by the way. No need to strike out.

It's got to be hard but you know that you can bring up teenagers to be happy, productive young people. You will be able to do it again.

oldmum42 · 18/04/2012 15:19

Hi AgnesD, at my age, I'm old enough to BE his granny! But yes, IKWYM, I was reading about Silicon Valley - where they have the an astoundingly high level of ASD diagnosed, due to all the high-tech companies there (and all the tec-geek employees). I use the word geek in a positive way mind you. The geeks shall inherit the earth and all that. I am a firm believer that many, many people on the spectrum have valuable skills and traits which can benefit us all (case in point, here we are chatting on computers, on the internet!)

We are already doing a lot of "early intervention" stuff with DS4, with his language and play skills, so hopefully by school age he may be doing better socially than DS3 (or DS1) at that age. I will look into ABA social skills further tho!

Are your DS1 and 2 also diagnosed? Regarding grandchildren, DH has joked that the boys must only marry "Arty farty flakes".... sorry probably a bit derogatory but he means people with no interest in science, technology or maths so the science genes get watered down a bit!

OP posts:
oldmum42 · 18/04/2012 15:26

Sallybear Smile, yes, we thought "Triangle" was cute as a first word, though slightly worrying. Yes, he does make our heart sing daily, as I'm sure your does too. He is a gorgeous, clever, funny wee boy and we wouldn't change him, whatever.

Ben10, thank you, I was just needing a moan really, and the big brothers are great......

OP posts:
oldmum42 · 18/04/2012 15:27

Agnesd Grin at Vtech!

OP posts:
zzzzz · 18/04/2012 15:32

This reply has been deleted

Message withdrawn at poster's request.

oldmum42 · 18/04/2012 15:44

ZZZZZZ Physicist + engineer! We are a Medic + Pure scientist (a mish-mash of biological and chemical science really, but "pure" is what my degree says!).

This fits my pet theory - generations ago when women didn't work in professions, there was less chance of geek man having kids with geek woman (I am certainly a geek woman BTW), and this probably stopped too many ASD genes concentrating.

But now - they are more likely to be working in the same tech/science jobs so marry, have kids and pass it on more often.

OP posts:
Ineedalife · 18/04/2012 15:44

I feel for you oldmum, i knew Dd3 was going to have issues from really early on because i had been through it with Dd1.

Dd1 was a real live wire but impossible to distract and very hard work. A consultant tried to get me some help with her when she was 4 but eventually when she was 9 the proffs decided not to dx her.

Fast forward 20 years or so and Dd3 was dxed with Asd. It was still a battle but there is much more awareness now and I have been more able to stand up for her.

Your Ds 4 is lucky to have parents with so much knowledge and i am sure you will find the world a fractionally more understanding place as he grows up.

Good luckSmile.

zzzzz · 18/04/2012 15:56

This reply has been deleted

Message withdrawn at poster's request.

oldmum42 · 18/04/2012 16:08

Wow Ineedalife, you have a really big family gap too! How did your DD1 cope in school without a dx? Did she manage ok?

Sadly, it seems ASD kids really do need their parents to stand up for them, the level of misunderstanding about behaviours is huge (I remember too many meetings where teachers said DS3 MUST know he was being bad/rude/putting it on,"because he is a very clever boy" Hmm ). Typically the teachers would not have read the carefully bound print out "Signs, symptoms and behaviour of Children with Asperger's" that I would hand over at the start of each school year.
I do think (and hope) that there is a lot more knowledge and understanding in junior schools now than even a few years ago.

OP posts:
oldmum42 · 18/04/2012 16:15

Absolutely ZZZZZ! I imagine you read the fairly recent article in thenewscientist which pretty much said the whole of human civilisation is build on the scientific discoveries associated with the emergence and spread of genes associated with autism and the social advancements brought about by the emergence and spread of genes associated with some types of mental illness. Twas a very interesting read.

OP posts:
oldmum42 · 18/04/2012 16:18

These genes emerged and spread in stone age times..... the worlds first Aspie invented a superior kind of flint knife and it was all go from there.......

OP posts:
SallyBear · 18/04/2012 16:20

Aspie DS1 wants to become an Archaeologist!! Scarily intellectual, but oh so sweet and kind and caring for a 12yr old (even if he does have mini hormonal tantrums) Wink

derigueur · 18/04/2012 16:23

You haven't got a link to that New Scientist piece, have you, oldmum?

I think it really helps to promulgate the positives of Aspergers. God knows there's enough negativity out there, isn't there? All ammo welcome. Grin

AgnesDiPesto · 18/04/2012 16:24

No DS1 and DS2 totally NT. DH is photographer (arty farty flaky). I studied history and law, shy but social. DS3 has appeared out of nowhere (blame it on my advanced age at conception). I do now look at my younger sister slightly suspiciously now though Wink. She's not got the full bundle but def a few social quirks now I know what to look for.

Instructions to self. Boys to only be allowed to date arty, flirty, nice but dim types.

derigueur · 18/04/2012 16:26

Don't want to expose my crew, but suffice it to say that I have an extreme sciencey type going out with a fellow extreme sciency type...sigh...I look forward to very clever grandchildren.

zzzzz · 18/04/2012 17:10

This reply has been deleted

Message withdrawn at poster's request.

oldmum42 · 18/04/2012 17:49

Ravilious, Kate (2011) Different minds. New Scientist. November 5th 2011. Issue 2837 p.35-37. www.newscientist.com/article/mg21228372.000-mental-problems-gave-early-humans-an-edge.html

Derigueur, link as above, but it's behind a paywall and the abstract only mentions "mental illness", but the article it'self is about Autism and Mental illness genes and human evolution. If you are subscribed to newscientist, you should be able to register to see things online too.

OP posts:
OP posts:
wasuup3000 · 19/04/2012 09:47

Oldmum what I didn't say when I responded to your post yesterday is my youngest child is very likely to get an ASD diagnosis soon - he will be the 3rd of my 4 children to be and it does it you hard 3rd time around- but your post about how well your older boys are doing is inspiring and it is because you have made sure they have suceeded that they are.