Aspergers how to explain a diagnosis to my ds

(14 Posts)
Beebeby Mon 12-Apr-21 23:14:45

i Need to explain to my child that Aspergers is not the end of the world. He is 10 and we were referred to Cahms due to anxiety and school refusal. His mood has plummeted. Since 6 months ago on a zoom call with Cahms (1st appointment) He was spoken to as if he knew he was autistic. When we explained we have never had this mentioned to us. They then stated well we will refer him for diagnosis but he definitely has Aspergers. Since then every trait has magnified yes even stronger. The hardest part is how depressed and afraid he is. Can anyone give me help on how to explain it to him positively. We have been treading water till we get more help. Lockdown hasn’t helped either.

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landofgiants Tue 13-Apr-21 10:53:52

Does he like books? If so there are a few on this subject. My DS(10) likes 'Different Like Me' by Jennifer Elder about famous historical figures who may have been autistic.

Beebeby Tue 13-Apr-21 12:33:45

Thank you he loves history so will order that today.

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niceupthedance Tue 13-Apr-21 13:52:34

Age 10 I'd look up some you tubers who are autistic as he may be able to relate (Paige Layle often recommended). My son actually felt better when he knew there was a 'reason' behind why he was feeling so anxious and low. So hopefully your son may take it in a similar way.

LightTripper Tue 13-Apr-21 14:41:16

The website "Autistic not Weird" is really good. It's run by an autistic teacher and has great articles for kids/young people as well as for adults/parents.

I agree YouTube is a great resource though you have to be a bit careful as there are some quite tough subjects discussed, so you'd probably want to watch with him. Young Autistic men you might want to check out include MaxiAspie, The Aspie World, Connor Ward, Joe Jamfrey, Just A Skinny Boy, Michael McCreary, Nathan Selove, Savan Films.

I realise that's a lot, but I don't know your son: hopefully if you look at these one or two might seem helpful, and then YouTube will start to suggest others no doubt! For many you might want to look at their earlier videos, as a lot of people talk about their diagnosis and experiences as a child quite early in their YouTube life, and end up on more esoteric subjects smile

landofgiants Tue 13-Apr-21 14:49:05

Might be a bit old for him, but I think Chris Packham's documentary 'Asperger's and me' is excellent. I recently watched it with DS and he seemed to relate it. Not currently available on iPlayer though, but I'm sure it will come up again. My boy has been helped by his (recent) ASD diagnosis, he was already aware he was different from the other kids at school, and he'd pretty much worked it out himself, so to have it confirmed was very positive for him.

Hopefully your DS will come round to the idea, it sounds like it has been a shock for him. If he is very anxious/down then maybe it is difficult for him to process it at the moment?

Beebeby Tue 13-Apr-21 16:35:37

Thank you all I will look into all recommendations. I appreciate the replies it’s a mine felid when you google. He was low before but it’s so bad now. Than you all

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LightTripper Wed 14-Apr-21 17:18:57

Poor thing. It is a lot to process and not the best way to find out without being told properly. I'm sure he'll get to a positive place in the end.

Here are a couple of good links from ANW to start him off:
autisticnotweird.com/growing-up-autistic-advice-for-teenagers-with-asperger-syndrome-or-mild-autism/
autisticnotweird.com/book/

And by the way his "1 in 100" estimate is already a bit outdated. In the US 1 in 54 children are diagnosed with autism and 1 in 6 with some form of developmental disability (see www.cdc.gov/ncbddd/autism/data.html). There's no reason to think the true proportion is lower here - and in fact in recent years the rate of diagnosis seems to be constantly increasing, so it seems quite likely to me that the true underlying incidence is even higher than 1 in 50. That means there are well over a million autistic people in the UK alone.

He might also like to know about famous autistic people (including Chris Packham, as @landofgiants mentioned above) in different fields, just to see the true diversity of autistic people (unsurprisingly, but maybe will help him feel nothing is closed off to him). If he likes vehicles then look into Guy Martin, for music Ladyhawke or Gary Newman, many scientists and computer scientists (e.g. Satosh Tajiri or lots of people say Bill Gates is autistic though I don't think he's ever said he is), for acting Dan Ayckroyd, Darryl Hannah, Paddy Considine, Anthony Hopkins, many many writers, many comedians (turns out seeing the world differently is very useful for comedy), for sport Jessica Jane Applegate or Clay Marzo, for business Michael Burry or Charlotte Valeur. There are autistic police officers, artists, lawyers, teachers, psychologists, cinema workers (just to name occupations I can think of for autistic people I follow online).

TheVolturi Wed 14-Apr-21 18:43:48

Please can I ask, did they say Aspergers or high functioning autism? My ds was diagnosed not long ago and the letter only says asd, when I questioned they said they didn't give more specific labels any more, I am in Lancashire, just wondering if it varies in other places? I find it all so vague.

Beebeby Wed 14-Apr-21 19:50:42

Thank you @LightTripper that’s exactly the type of thing I need. The link is what I asked Cahms for as the gave us lots of websites. Navigating through it all takes hours and I then feel overwhelmed. I have purchased the book on historical people recommended above. Just waiting on an appropriate time to give it to him. I think I will have a chat about what he think of it all and then talk about the book. @TheVolturi they did say that it was known as Aspergers but would be sad if diagnosed. It was at the end of a very long meeting and they did backtrack as they said they mixed him up with someone else. I asked now that you have said that what if it isn’t. The reply was it definitely is. Its then as if someone has opened the autistic floodgates everything it stronger and more intense than before. For him I feel he wants to know about it but closes down saying he doesn’t want to talk. So so difficult.

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Beebeby Wed 14-Apr-21 19:52:07

ASD not sad diagnosis although there has been a lot of sadness so Freudian slip

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Beebeby Thu 15-Apr-21 01:20:15

Also wanted to ask when your kids just don’t need sleep what do you do? Just leave them too play or insist and it ends up a meltdown.

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TheVolturi Thu 15-Apr-21 07:31:15

My asd ds does not sleep. He never has, since he was born really. Its the falling asleep that he really struggles with, so if he wakes in the night he's awake for ages. Can't go to sleep on his own or at a normal time. We have just sent sleep diary to consultant I think they are going to try him on melatonin.
I do everything I can to avoid melt down in the night because we have two other dc and he doesn't care if he wakes them with his banging and shouting. He bangs his bed and yells if he wakes up 🙄

Beebeby Thu 15-Apr-21 18:29:23

@TheVolturi I have this issue as well he has to be exhausted to sleep so 4/5 am still awake. I have no other kids at home but the neighbours must hate us. It’s the shouting and loudness at night that is the main issue. He ends up watching tv just to keep him quiet. It’s so hard to know what is his condition and what is pushing boundaries. We know so little about Aspergers all self taught really. So I just wondered if I’m setting my self up for him to never go to bed when we want him too as he knows he will get the tv on if loud enough. It feels like all structure has gone the last 6 months.

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