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I need advise on how to tell DS that he has autism

(43 Posts)
BerthaMasonRochester Thu 21-Feb-19 07:43:39

I need to talk to DS about being autistic and what that means and I’m looking for resources that explain it. I’m struggling to find suitable books or videos.

He’s high functioning and his traits are very subtle. He communicates well and clearly. He doesn’t have typical stims. He is intelligent and academically able but certainly no savant. He’s not particularly rule-bound. His interests are pretty mainstream (lego, Minecraft and gaming). He is extremely creative and imaginative. He has a best friend in school and is generally well liked in his class. He has a brilliant sense of humor. He has a temper, and can get very upset easily but nothing that could be described as a meltdown. He doesn’t mind being touched.

In terms of how his autism does present:
He forces conversations towards his interest/ imaginary scenarios.
He has oral sensory issues, needs to chew, is a picky, limited eater.
He masks in school.
He struggles with sudden changes in pace, transitions.
He focuses on how situations affect him (eg I don’t like going to the hospital because it’s boring) rather than the other person’s pov (your sister broke her leg and is in pain)
He needs strong sensory input. He needs a lot of downtime. He likes to be the judge/umpire rather than joining in or he wants to play his way rather than by the rules.
He has very strong feelings. He doesn’t get annoyed as much as murderously angry (but doesn’t necessarily act on it)
He’s passionately environmental.

I’m struggling to find descriptions of autism that he will relate to and will make sense to him. I’ve checked out a couple of books and videos. When he was first diagnosed we attended various parent classes and they never seemed to be talking about our ds. We had doubts about the diagnosis and I suppose I’m concerned that if he can’t relate to examples and descriptions of autism, I’m just going to confuse him.

It doesn’t help either that it’s described as a “disorder”. In one video on you tube there’s a graphic showing tangled wiring and wrong connections in the brainhmm What I want him to take out of this is that his difficulties and struggles have a name, a reason and a community. I don’t want him thinking that he’s wrong or has a faulty brain etc

He has the capacity to pass under the radar mostly. School have never identified him as anything but a lovely student. There are a few people in the family that I suspect are also on the spectrum, who are successful professionally, married with families. But I’ve heard of so many people who sought out a diagnosis as an adult and felt huge relief. I don’t want him to be always trying to fit in, but to know that who he is is fine, and to celebrate and benefit from neurodiversity.

I’m concerned that if I don’t approach this well, I’m going to leave him marooned, feeling he doesn’t fit in with the NTs but he doesn’t fit in with the asd community either.

Has anyone had this discussion with an older child (he’s 9)? Anyone have a child on the spectrum who doesn’t present stereotypically? Or anyone with asd themselves who can advise.

exLtEveDallas Thu 21-Feb-19 07:50:39

Could you check with your LA? Our LA runs a course over 6 weeks where someone comes into school and talks to the child about their Autism. It's free for children with a diagnosis and I've seen good results from it. They also do sessions with the child's class if it's needed to help them understand.

BishopBrennansArse Thu 21-Feb-19 07:57:02

The way I described it to my kids (and I'm autistic myself) is the most people's brains are like Windows operating systems, ours run iOS.

They both work properly, they both do largely the same thing but they're different.

Sometimes the two systems are incompatible with each other and cause issues.

Neither is better or worse, they just have different priorities - doesn't mean either is lesser.

Pluginwall Thu 21-Feb-19 07:58:04

A girl I know with ASD, who is 11 years old, really likes the Amazing Autism video on YouTube- it is made by the National Autistic Society.

LemonySippet Thu 21-Feb-19 08:01:31

This video might help, the older boy in the video sounds a bit similar to your son www.asdinfowales.co.uk/autismchildsigns?fbclid=IwAR1RLyEMW5aU4vqgRH5ZpzglVRHE3aLFqMJiRBbIXtwLU2HjGXcUOn74ykc

anniehm Thu 21-Feb-19 08:04:25

I never told my dd that she had a recognised disability but she diagnosed herself at 11 - her teacher called me (you can imagine I was worried at that point) but it was to share the amazing presentation she had given to her classmates on what it is like to be different and how autism affects young people! We did quiz her afterwards and she said she worked it out from the internet! Later she has had cbt and other interventions but hadn't at that point since 5.

Dohee Thu 21-Feb-19 08:10:01

He sounds like me! I don't have a diagnosis though and for that reason I wouldn't be telling him he has anything.

I suppose I would start by saying 'Baby, you know when you get annoyed by xyz, now we know why! It's because you see the world in a special way and now that Mammy and Daddy know, we can start to see the world the same way as you do. So now you can tell us how you feel and if you can't tell us, we'll know now'

SuperLoudPoppingAction Thu 21-Feb-19 08:13:05

www.jkp.com/uk/m-is-for-autism-1.html this book is good although it's about a girl

SuperLoudPoppingAction Thu 21-Feb-19 08:14:12

www.amazon.co.uk/dp/B00CQ8NR04/ref=dp-kindle-redirect?_encoding=UTF8&btkr=1&tag=mumsnetforum-21 this is more for parents but written by somebody with autism

Viewofsaturday Thu 21-Feb-19 08:15:15

Hi, I also found so much stuff that has disordered in it and there's no way on earth I'm telling her that she's disordered.

I used one of the NAS books on speaking to your child about diagnosis as a template and made a photo book. It was A Book About Me type thing but included "one special thing about me is that I'm autistic" and then my own, relevant to her, description of autism. I included the benefits of her autism, some things are harder but these people help me /I have already got better at x, and a section about famous people with autism. You want Chris Packham in there for the environmental stuff I guess! Then back to more general stuff like what would she be when she grows up. But basically a nice book about how great she is, her friends, skills etc with a bit about autism in the middle.

It was helpful for me because I didn't worry about saying the wrong thing and upsetting her. She liked it and went off and read it lots of times by herself so having it all in black and white helped give her the processing time she needed.

It was so successful her sibling insisted he was sometimes autistic too! It was a really important part of how positive she is about autism.

SuperLoudPoppingAction Thu 21-Feb-19 08:15:55

www.amazon.co.uk/dp/1785922777/ref=asc_df_178592277758591636/?hvlocphy=1007333&linkCode=df0&hvptwo&psc=1&hvnetw=g&hvadid=310831412334&creative=22110&hvpone&hvlocint&creativeASIN=1785922777&th=1&hvpos=1o5&hvdev=m&hvdvcmdl&hvqmt&tag=mumsnetforum-21&hvtargid=pla-618107835967&hvrand=11610177007693018390 I got this from the library but it's for people who don't know much about autism

FenellaMaxwell Thu 21-Feb-19 08:16:52

I wouldn’t tell him his brain was wired wrongly, just that some people’s brains are wired differently, and that it’s good and special to be different.

Cuntforthebutter Thu 21-Feb-19 08:18:59

Sorry OP I don't have any useful advice because we haven't made it to diagnosis yet.

Do you mind me asking whether you struggled to obtain a diagnosis because your son is so HF? My DD is also HF and pro masker so having a tough time getting anyone to listen. Sorry to derail!

solittletime Thu 21-Feb-19 08:19:15

Could you wait until end of year 5, so when he's more 10/11?
That extra year makes a difference I think.
If he's not feeling distressed or suffering from low self esteem as a result there might not be any rush.
Have you had a cahms assessment?

hellsbells76 Thu 21-Feb-19 08:21:03

When my DS was going through the process of being diagnosed at 7, I took him for a walk and launched into a rehearsed and agonised over speech about how some people's brains are wired differently and it might mean he'd be really good at some things but struggle with others, but talking to the nice doctors would help him in the future and I loved him just the same (I tell you, it brought a tear to my eye).

He listened carefully and then answered: 'OK. Do you know how a steering wheel works?' grin

SwimmingJustKeepSwimming Thu 21-Feb-19 08:22:29

I have a 9 year old just going theough the process (surely your son knows if hes been to assesments?? Or what did he think he was doing?)

Im still puzzled by it all though as my girl neither presents like a stereotypical autistic boy (to be expected as shes a girl) or like your boy at all. She's very empathetic and can clearly see others points of view.... so what meaning does the label autistic have, as in what does it convey if 2 quite opposite people have it?
We've talked about brain wiring being a vit different but many of my daughters autistic traits I like/am similar so its a bit easier - I can say oh we both do that and it makes sense to me! Her biggest challenge though is changes the school day, which she then meltsdown straight after school rather than in school.

Shes never been typically girly for the sake of it or following fashion for the sake of it and I love that too - proper feminist in training!

raffle Thu 21-Feb-19 08:22:36

He was involved in assessment surely? So doesn’t he already know he has ASD?

BerthaMasonRochester Thu 21-Feb-19 08:26:47

Thanks for the replies. I’ll have a look at those resources.

SwimmingJustKeepSwimming Thu 21-Feb-19 08:26:57

Wow the book sounds amazing. I think a bit young for mine as shes 10, but to have it clearly laid out is fantastic.

Mine does like a list of whats happening that day or plans for a different school day laid out etc. If id have known younger I'd have so done the book.

JanMeyer Thu 21-Feb-19 08:28:39

Hi, I'm an autistic adult and I just wanted to say I don't think in terms of "disorder" meaning there's something wrong with my brain or me. To me disorder is a perfect word to describe autism because that is literally what autism is, disordered development in the sense that my development (and that of other autistic people) takes a different path to NT people. Our development is literally out of order, for example my autistic brother learnt to read before he could communicate verbally - not wrong, just different. It doesn't have to be framed as a negative thing, just different. For example you say he's passionate about the environment and that he gets upset/annoyed easily, those are (to borrow a saying from captain america) two sides of the same coin, you can't have the positive without the negative is what I mean.
People with autism do tend to have very strong feelings, which is ironic because the stereotype is that we are emotionless little robots.

One thing I don't like about autism at the moment is society's relentless obsession to perceive it entirely from a positive perspective. I always find it worrying when I read about parents (with the encouragement of books written by so called professionals) telling their kids that autism is their superpower and it's what makes them awesome. It's fine to be positive about autism but there's no need to over do it. Autistic kids need to know its ok for them to struggle with things because of their autism sometimes and it's ok to say so. Sorry, that was kind of a tangent, but felt somehow relevant.

It's funny you don't "see" him as typically autistic because from what you've written he sounds like a fairly typical Aspie to me, passionate, articulate, struggles with change, intelligent, in to gaming and Lego, picky eater. If he's really into gaming then you could talk to him about (maybe as an intro point) that many tech people are autistic, and in fact the creator of Pokemon has Aspergers.

One thing that really jumps out at me from your post is how stereotypical a view of autism you have, which isn't your fault given that those stereotypes are the ones you see represented constantly in the media. Lots of people with autism have a great sense of humor, are fine with being touched and don't have meltdowns, and are creative and imaginative. I guess the point is there is no stereotypical presentation of autism, it affects everyone in ways unique to them. Which is why some people refers to autism in the plural, because everyone's autism is unique to them.
As for books Loud Hands, Autistic People Speaking is a good book in terms of learning about autism beyond the stereotypes and what it can really mean for people.
You could also watch My Autism and Me (you can find it on youtube) which is presented by an autistic girl named Rosie. Lots of parents use that video to introduce the topic to their kids.
I hope I didn't ramble too much, and if i did, well i hope there's something you might find helpful in there.

ShirazSavedMySanity Thu 21-Feb-19 08:31:39

Intge most recent training at our school, autistic children are referred to as ASC - Autistic Spectrum Condition.

I think it’s much better to refer to autism as a condition than a disorder

JanMeyer Thu 21-Feb-19 08:36:33

She's very empathetic and can clearly see others points of view.... so what meaning does the label autistic have, as in what does it convey if 2 quite opposite people have it?

Well first of it's a diagnosis not a label, secondly it's a myth that's been debunked (though apparently not everyone got the memo) that autistic people lack empathy. There is no one stereotypical presentation of autism, there are only individuals with autism, and it affects everyone in different ways. Some people struggle with change, some people don't. Autistic people are just like everyone else, they're all different. All autistic people have difficulties in the same three areas, doesn't mean they all have to have the exact same difficulties, it would be weird if every autistic person had the exact same problems.

SwimmingJustKeepSwimming Thu 21-Feb-19 08:56:35

Jan I completely agree with all you say. For our screening we had to do an empathy questionairre though (!).

What I meant is that if there is nothing that is in common to people with autism what is autism? As in is it meaningless as a word if each person with autism is completely different from the next.

If i had someome with asthma and someone with diabetes but gave them a metalabel it would be meaningless.

I think what Im getting at is what does it mean to tick the Autism box for heath screening/school if it literally doesnt convey any meaning.

SwimmingJustKeepSwimming Thu 21-Feb-19 08:59:00

(Struggling to articulate what autism is for her (and possibly for me as I share traits but not sure I share enough traits. I could probably tick the adhd box and wondered about diagnosis before).

Shookethtothecore Thu 21-Feb-19 09:02:15

I have no advice but just to say that you telling him (and those of you that have done the same) are doing the best for your children. My husband has adhd, was medicated as a child and we never told by his parents why. He was told the drs appointment and pills etc were because he was so clever and growing so well. I cannot tell you the problems this has caused and we only really found out the full extent when our son has been assessed for the same. They told me I should never tell him “what’s wrong with him” and how I never bit their head off I’ll never know.
You all sound like lovely wonderful caring parents and DH has had a world of pain finding out about himself in his 30s

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