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Some questions about ASD

(12 Posts)
gutted2014 Wed 12-Mar-14 18:08:27

I have another thread on here, my DS2 has just been referred to ADOS & the appointment will probably take place in about 18-20 weeks.

But I have a couple of questions, which may silly, but I don't feel I can ask anybody irl, so I hope you'll humour me.

- If my DS2 has ASD, does that make it more likely that newborn DS3 will have it too?
- Did/does your DC with ASD experience a lot of bullying?
- Statistically, how likely is it that a DC with ASD can go on to live independently in adulthood? (I've been told that if ds has asd, it is not severe)

Thank you for humouring me smile

ouryve Wed 12-Mar-14 18:54:47

There is a genetic link in may (but not all) cases, yes.

My boys are both at a supportive school where they have experienced no significant bullying. DS2 had a few cruel taunts from other boys in his class, back in year 1, but they were dealt with firmly and there has been no recurrence. One boy got wind of the fact that DS1 really hated having his head touched, at one point, but again, it was dealt with as soon as it was spotted (before DS1 decked him!) One boy couldn't cope with the fact that DS1 wouldn't say hello to him and that went on for a while. That was perceived by the boy's parents as DS1 bullying him, when all he wanted to do was be as far away from him as possible. Apparently DS1 was hurting his feelings hmm School staff did everything they could to keep the boys apart. I've just secured a placement at a specialist school for DS1 (he's 10), partly because, while he's known and respected, now, the same won't be true at a mainstream secondary and his temper would make him very vulnerable.

Pass

Levi174517 Wed 12-Mar-14 19:02:20

I think sometimes ASD seems to "run in the family". I know DS has a diagnosis and DD shows enough symptoms to ask for a referral. I suspect it comes from my FiL via my husband.

However, DSiL and DNiece show no signs of ASD so there are obviously other factors. We also have family friends with only

I don't know if your DS3 will have ASD; you don't mention that DS1 is on the spectrum so I assume he isn't.

pannetone Wed 12-Mar-14 19:02:28

I will humour you and have a stab at answering your questions, but I am only going on my experience so no statistics are involved!

Q1 Yes if DS2 does turn out to have ASD it does make it more likely that newborn DS3 may have it too. There is some genetic 'component'. Note may, not will. But even if DS3 has ASD he may still be very different from his older brother. I have 3 (out of 4) with ASD, all 'high functioning' and all quite different to each other. Each is an individual who happens to also have ASD IYSWIM. Enjoy your newborn!

Q2 No my 3 DC on the spectrum have not experienced a lot of bullying thankfully. (They are now 19, 12, and 9.) That is not to say they haven't had difficulties with social stuff - but it has been more that they have felt 'different', than they have been singled out for 'being' different.

Q3 Can't do any statistics here but I would hope that all 3 of mine will live independently in adulthood. 19 year old DS2 is at uni now - he is mostly managing the living as a student bit, (it is his first year) though he hasn't got to grips with all the academic stuff yet. He could live at home and travel to uni each day, but he wants to be living away now, so he has made that 'transition'.

Hope that helps. The waiting to 'find out' is a really tricky time flowers.

Levi174517 Wed 12-Mar-14 19:11:30

Sorry. Was distracted by DS peeing in the kitchen bin!

Family friends have four children only one of whom has ASD so its not a foregone conclusion.

DS has never been bullied. He was a very popular member of class in Reception despite never initiating friendships or attempting to communicate with his peers. He's now in specialist provision full time. I know other ASD children at the school and they're not bullied either. I know it happens but we've been lucky.

I can't answer the last question for certain. FiL is a retired policeman. We have two adult friends, i know of, who are on the spectrum (quite a bit higher than your DS would be I think). One is a software developer and the other makes a pretty good living gambling - is great at calculating odds!

Hope I've set your mind at rest a bit.

zzzzz Wed 12-Mar-14 19:18:31

The genetic question is tricky. There aren't any other children/adults like ds1 in my frankly huge family. There are plenty of eccentrics though. Certainly none of my 16 first cousins or their 30plus children have significant issues.

I sincerely doubt my ds1 will leave home, but I would be amazed if his 4 siblings didn't.

I think it's fluke, but none of my children are average. grin

gutted2014 Wed 12-Mar-14 20:17:50

Thank you all for humouring my silly questions & answering me.

DS1, as far as I know, does not have ASD. Nor do any members of either mine or DH's wider family, except for one first cousin on my father's side, whom we suspect has Aspergers. I feel a bit sad to learn that DS3 is more likely to have ASD if DS2 has it - I just can't equate that with the perfect newborn sleeping peacefully in his pram. I want his life to be perfectly smooth & perfect, just like I do for my other two, and I want to protect them all from anything that might cause them difficulties [silly soppy mum emoticon]

It is reassuring to hear of many people on the spectrum in successful jobs/studies & leading independent lives.

It is also great to hear that bullying is not particularly rife in your experiences.

Levi by higher on the spectrum do you mean more affected or less affected?

Thanks again

Levi174517 Wed 12-Mar-14 21:39:32

The ADOS scores out of 24 if I recall correctly. Someone can hopefully correct me if I'm talking nonsense!

When DS was diagnosed our county were diagnosing everyone who scored between 6-24 with ASD. He scored 12 and has an ASD diagnosis.

Before they changed the system a score from 1-5 was NT; from 6-7 was PDD-NOS (a bit of a mouthful it stood for Pervasive Development Disorder Not Otherwise Specified, I think in real terms it meant they've got some signs of ASD but not enough for a clear diagnosis) from 8-11 was ASD/ Aspergers and 12 upwards was classic autism.

Mr Software scored 9 the last test he took. Mr Odds Calculator scored 17. A family friend is now at university studying applied maths and physics. I know friend has a diagnosis of autism so obviously scored 12 or more. He's coping fine at university - perhaps doesn't do his laundry as often as he might but nor do his flat mates.

From your posts it seems DS2 may or may not have ASD so I hope if he does it wouldn't be as severe as the examples I've given.

Please don't assume that if DS2 has ASD then it follows DS3 will get it. I don't think it's a foregone conclusion. I think sometimes you can get yourself into a spiral of despair or disappointment. I'd advise waiting until the outcome of the tests; there's no need to borrow trouble.

By the way I'm a big fat hypocrit and ALWAYS borrow trouble so I know how hard that advice is to take.

gutted2014 Thu 13-Mar-14 10:09:46

Thanks for clarifying that Levi. I know you're right about borrowing trouble & it's what DH says, too, but I just can't get it out of my head. The SALT's words just keep echoing round & round, as do all the negative things anybody has ever said about DS sad I am trying to be constructive with it, though & have written a list of things I think do or don't point to autism in DS2, so at least it gives my worries a focus.

Levi174517 Thu 13-Mar-14 10:49:45

It's a shock when someone sees something in your child that you missed. The thing is its not just you who didn't spot signs. I remember you saying DH didn't spot any either.

I missed completely ignored all the ASD signs in DS but if its any consolation all but one of our friends and family spotted them. The person who agreed with me felt DS was suffering from a past life trauma and needed his aura cleansed with purple light; she recommended asking for a white witch to cleanse the school as part of his statement! Much as I'd have loved to see the LA reaction to that one it did show I didn't have reason on my side!

Also I too did the clutching at straws. I read an article that chldren with ASD have larger than normal head circumferences. Complete bunkum but I'm ashamed to say I measured DS's head before the Autistic Diagnostic Interview. I think my first words were "I'm fine thank you; DS's head circumference is on the 50th centile". I was picturing the paediatrician stamping "case closed" on his file and letting me go.

But he has got ASD and I'm fine with that. It's who DS is. If your DS is on the spectrum you might be naturally upset at first but you'll get through it. No rush; no pressure.

thanks

StarlightMcKingsThree Thu 13-Mar-14 12:30:45

Hi Gutted,

1) I have 3 children. Only the first has ASD. Some versions of ASD are genetic but some are not. If your DS1 does not have it, that increases likeliness of it not being genetic in your ds' case.

2) Bullying is complex. ASD can mean that social perception is impaired and there can be difficulty interpreting events. That means bullying can occur and go unnoticed, or a friendly pat can be interpreted as bullying. The child and his peers will need ongoing support to reduce any negative impact and I would recommend you chose the school carefully.

3) This is impossible to say. Some do need a lot of support and some need very little. One thing though (and I'm sorry this doesn't help), almost everyone is told that their child is not severe in the early years. It is offered as a sop and encourages families to feel undeserving of funding (sorry). In truth you should seek as much quality intervention as you can regardless of severity as early intervention CAN make a difference to prognosis.

AlarmOnSnooze Thu 13-Mar-14 13:12:35

I have 3 dc also. and a couple of relatives who have some social communication/language related difficulties.

to a lot of outsiders, only my dd1 has ASD (she is 9, has severe ASD). however, dd2 (age 7) is being assessed today (we have known for a long time and have been 'watching and waiting' as she not-quite-NT, and ds (19 months) is also in the system as he appears to have some delays and speech issues - only time will tell!

some ASD has a genetic element (eg I think the issues my dd2 and ds are facing are likely genetic, dd1 seems to have had an added bonus thrown in there which has increased her severity), some doesn't.

bullying will very much depend on area/school environment. all schools have some form of bullying to some degree. dd1 has not ever been bullied at school - she did have some difficulties with children at pre-school, but mostly because they were young and not understanding her difficulties themselves. it was soon nipped in the bud.

living independently? well, my dd2 will. dd1 probably won't, despite the incredible advances she is making. ds - it's a bit too early to tell. my stepdaughter has some spectrum issues (not formally dx'd), and while she is high functioning enough to hold down a job, has finished school and managed a foundation degree, it is unlikely she will live independently for quite some time. she just can't quite manage it.

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