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

[BerthaMasonRochester]

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 brain 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.

reading all the replies with interest. I’ll respond to the questions later tonight when I can

Oh and I totally agree with shook you do need to tell him, I’m sure I’m autistic although undiagnosed, for years I have felt I’m “weird” compared to my peers. I mask very well but it’s vey stressful and I wouldn’t have to mask if I had a diagnosis and was told why I was different.

This thread has been a big help to me op. My son is seven and has HF Autism. Sounds very similar to your child but he was diagnosed at 5.

We were waiting for the right moment to tell him because we know as soon as he knows he will share it with everyone, and people may start treating him differently.

He's just started accessing a social group for kids like him and the place does have a slogan displayed on the building that mentions Autism. So we know we need to tell him before he asks someone else.

So far we've said people have different types of brains and his brain has a little trouble concentrating but its excellent at making jokes and maths.

I'm going to trawl through your thread to find what we need to have this difficult conversation too. I don't want him to think he's made incorrectly, just differently and that too is excellent!

But there are things that people with autism have in common, all people with autism have difficulties with social interaction, communication and flexibility of thinking. That's what we all have in common, if a person didn't have difficulties in those areas they wouldn't be classed as autistic and as part of the spectrum. Its not meaningless as a diagnosis because we all have our own personality which plays a part just as much as the autism does in terms of who and what we are.
The way those difficulties present themselves are different, but if autistic people had nothing in common at all then Asperger or Kanner would have had nothing to identify and write about would they?
Obviously autistic people do have something in common because otherwise there wouldn't be a diagnostic criteria. It's weird how no-one expects NTs to all be exactly the same but people are confused that autistics aren't carbon copies of each other.
People are diagnosed according to that criteria , it's not like they assess us and decide "sure, you're weird enough, you must be autistic" 😀 So given there is a criteria, how can the word autism be meaningless?

To compare it to another disability, is the term cerebral palsy meaningless because there are subtypes of it and people with it are affected in different ways? Seeing the word cerebral palsy on paper wouldn't tell you anymore about the difficulties a person has (or what type they have) than autism would. With the former some people can walk, some people can't. With the latter, some autistic people are non-verbal, some are very articulate but only superficially able. But that doesn't change the fact both words have a specific meaning.
By ticking that box you are stating that your child has a developmental disorder which affects the way they perceive and interact with the world, and that they have difficulties in the triad of impairments. Seems a pretty specific meaning to me.

Thanks Jan for the explanation. That was brilliantly clear and makes a lot of sense. I didnt know that it was framed in terms of those difficulties and indeed would have made more sense to me if I had realised that was the case.

I had been reading in terms of traits or difficulties/abilities that some people had but it didnt seem people shared the same difficulties so that does make a lot more sense.

Im not sure how I yet feel about describing her as having difficulties in those 3 areas, its in stark contrast to those framing it in a positive light. For example she is hyper intelligent and very quick to read (as was I) and her brain makes connections between things v fast.

I think her dislike of bright lights/loud noises/crowds makes complete and perfect sense. I wouldn't have labelled it a difficulty.

Half the times the things she has "difficulties" with are things I think make sense...

But I had somehow in my googlefu completely missed the proper definition of autism. Thankyou.

I just spotted this lovely video on my facebook timeline and had to come back to share to it with you.

Amazing Things Happen

Wow I love that video Rabbit.

Ive been told it can take up to a year for a full assesment so far we're going on the schools assesment and the AQ questionaiire they did (and in my case it was recognising she had various traits.)

So weve talked about it in a low key already saying it doesnt mean anything about her has changed, but some people's brains are wired differently which makes them better at some things to the majority and makes other things harder. In her case we've talked avout the difficulties with transitions and changes to routine and how school have put things in place, and her need for ear defenders in class, and explained it could be labelled autism but we will find out.

It's all been quite low key as not to be a big deal, but whats really helped is her feeling we're taking her need to know whats happening next seriously and to plan for changes etc.

My son is 5 and im thinking a lot about this at the moment.

Hes academically v gifted but id happily hand that back just to have a child who can make friends. Eat. Sleep without melatonin. Poo without taking all his clothes off. etc etc etc

I have told him that a lot of his brain is focussed on retaining information but it means that the "other bits" have less room so he might find some things harder that other kids take for granted.

Like pooing without taking his clothes off.

He's v comfortable with himself, and I don't think he's too bothered. He's at the age when he know if he's banging on about topics too much, understands that orange food colouring turns him into the devil child from hell, so he does have some self awareness, which I am increasingly surprised by.

Not autism, but we went with (before testing - we needed to explain why we were flying out of the country for the day....) we knew he struggled with some things, and wanted to find out exactly what worked differently in his head, so we could find other ways to explain things and help him,
And afterwards, yes, your brain does work differently to most. And while that means X, Y, Z is hard, you are also brill at A, B, C. We are going to try this and that to make life easier for you. School will too. Let us know what is good. And also picked out some famous examples of people who have done great things due to their differences (I dont know how easy this is with autism).

This has all been really helpful. It will take me a while to check out all the resources suggested.

just to clarify- I know my OP was very stereotypical but that’s not my understanding of autism. My point was just that every children’s resource I’d looked at so far was describing it in that way.

@jan the distinction between describing asd as a bunch of traits versus the triad of impairments is really helpful. Actually everything you’ve written has been helpful.

@Viewofsaturday I think it might be a good option to use an existing book as a template but customize it to be more relevant to ds. I’ll definitely consider that if I don’t find something suitable. He’s a good reader, and I think will process the information better through print than through a conversation, though we’ll have those too.

To answer a couple of questions that have come up:
@raffle ds was diagnosed at 3, so the process is long since forgotten by him. @Cuntforthebutter Being hf definitely made it much harder to get him considered for assessment. It was actually a bit of a shock when we got to that stage to be taken seriously because up to that point I was basically told I was inexperienced, damaging him with perfectionist expectations and needed to learn how to parent properly. I was actually a bit shocked when he was diagnosed that it hadn’t been all in my imagination.

Dd, who is neurotypical has had physio and ot as well so attending therapy sessions was, for a while, just our family’s normal. Quite a few kids in both their classes take time off school for ot and slt too.

We’re not in the UK. And the services here have been pretty dismal and very much a cookie cutter approach With little or no attempt to consider what he could and couldn’t do. Also he can be very demand avoidant, hugely anxious and aggressive about attending apts and then masked so beautifully that they wouldn’t believe me. I’ve found it more effective to consult with professionals and implement their suggestions myself at home rather than bring him directly to services. So for the last couple of years we haven’t had direct contact (I have to emphasize that he’s made a lot more progress taking this approach)

We don’t have an attitude of normal/ right/should as a family. Everyone of us has our own challenges, things we find difficult, things we enjoy, strengths and weaknesses. We’ve always talked openly about how our brains work, stimuli that bother us or soothe us. We did an escape room challenge recently and it was very interesting to see what each of us brought to the situation, what we struggled with and what talents we hadn’t noticed in ourselves. I
don’t think the “superpower” approach is helpful but I do ascribe very strongly to the benefits of neurodiversity. And I think that it’s often more effective to consider how to manage the demands of the external environment rather than than trying to “fix” the traits of the individual if that makes sense. We all have to use strategies to get by at times and it’s something we discuss openly.

Up to this point the diagnosis hasn’t been particularly helpful. We accessed services that were more problematic than beneficial. And I haven’t found it useful to think “well this is because of autism” because our whole family works on the basis of identifying individual needs and traits and issues and trying to accommodate each other.

I think that now, he’s getting to an age where he’s more reflective and his self esteem is low and it might help to take a broader view. Particularly as going forward, his peer group will likely be more influential than his family.

I’m sorry that was so long! It’s really enormously helpful to think through my mindset before broaching this with him. I really appreciate all your input.

@Cheerybigbottom
We were waiting for the right moment to tell him because we know as soon as he knows he will share it with everyone, and people may start treating him differently

I have to admit that I’ve been discouraged by my experiences so far of sharing his diagnosis, largely because if the way people treat him differently than before.

In so far as I agree that it’s a diagnosis and not a label, there are still issues with the way it is perceived. There’s a whole social constructionist aspect that needs to be taken into account.

It also concerns me that the official understanding of what it is has changed several times since the 1940s, and each change has brought with it approved therapies and methods. I think it’s presumptuous to assume that our generation have got it exactly right, and that history won’t raise an eyebrow or worse at what is considered “the right thing to do”. But also it’s imposdible to judge!

Bertha - I'm glad what I wrote was helpful to you in some way. Reading your follow up posts I can understand your perspective a little more. And your way in thinking in terms of managing the environment rather than "fixing the individual's traits," that's a great way to be thinking, its recognising the autistic person struggles with something but not putting all the blame at the door of their "faulty brain" if you get what I mean. It's great that you can talk openly about such things.

I also understand what you mean about negative responses when it comes to sharing the diagnosis with other people. Yeah, that is a very tricky thing, and the misconceptions out there about autism don't help. It helps even less when professionals are just as susceptible to that narrow view of autism as lay people are. But I just wanted to say even if your son feels negatively about autism at this point in his life or in his teen years, that might change as he gets older. My brother didn't want to know about autism all through his teen years, mention the word and he'd get all defensive and say "I'm not stupid", now he's in his mid twenties he's fine with it and says "it's just the way my brain works."

In terms of the history of autism and our understanding of it, have you read Neurotribes? Because it's a really great book, actually someone else has probably already recommended it to you 😀
One final thought, its interesting that our understanding of autism has changed so much, yet it's actually Asperger's view that turned out to be the most accurate. For example he understood autism was a spectrum long before anyone else even considered the idea.

Place marking for all the useful resources. Thank you and good luck OP.

@BerthaMasonRochester just wanted to say how helpful your post has been to me ( and I hope you got the help you were looking for!).

Your description of your DS could be my DS. I have struggled for a long while to get someone to take my concerns for him seriously and also then doubt myself that it is just me trying to excuse my parenting/him or something. Probably sounds silly but your post and description of your DS has given me that encouragement to try and engage with school/doctor again.

Great thread OP, thanks for posting. My Ds aged 9 has had a diagnosis since he was 4 and we are about to work out how to explain to him. I have mentioned it to him a few times though in a casual way (Chris Packham was talking about it on radio 4 once when we were in the car and I mentioned that Chris had autism like he did. ) So just sort of mentioning it, and normalising it not like it is a big unspoken about secret.

I will check out the resources also.