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ASPartOfMe
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02 May 2022, 10:37 am

When Is the Right Time to Tell a Child They Have Autism?

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Kofner, Kapp and their colleagues answered that question by asking 78 university students about how and when they found out they had autism. For the most part, the investigators found that telling kids when they are younger helped them feel better about their lives as they grew up.

"Talking openly with autistic people about being autistic when they are young may help them grow into adults who feel happier and more comfortable with who they are than they might become if they don't learn this key information about who they are until later in life," said lead study author Kristen Gillespie-Lynch, an assistant professor of psychology at the College of Staten Island.

"Learning that one is autistic at a younger age can aid better self-understanding as well as access to support, which in turn lays a foundation for well-being as an adult," added study author Tomisin Oredipe, a graduate student at the College of Staten Island. The new study, which was published recently in the journal Autism, is based on Oredipe's thesis paper.

It's not just age that matters though, Oredipe said. Other factors include your child's developmental level, curiosity, support needs and personality.

Almost more important than when an autism diagnosis is disclosed is how it is disclosed," said Kapp, a lecturer in psychology at the University of Portsmouth in Hampshire, England. Make sure to talk about your child's strengths as well as their challenges in a language they can understand, he said.

Almost more important than when an autism diagnosis is disclosed is how it is disclosed," said Kapp, a lecturer in psychology at the University of Portsmouth in Hampshire, England. Make sure to talk about your child's strengths as well as their challenges in a language they can understand, he said. "My mother said my brain worked differently, and I thought that was a good explanation," recalled Kapp.

It doesn't have to be a one-and-done conversation either. "Do it in pieces over time," Kapp added.

The new findings mirror what Robert Naseef sees in his practice. He is a psychologist in Philadelphia and a member of the Autism Society of America's panel of professional advisors.

"Some of the best-adjusted people in college and beyond knew about their autism all along, just like it was the color of their hair," said Naseef, who was not involved in the new study.

The findings don't necessarily apply to people with autism who are non-speaking or minimally verbal, he noted. "If they don't have the vocabulary and the ability to understand, then we just help them grow as best we can," said Naseef. His adult son is non-speaking.


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Joe90
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02 May 2022, 1:20 pm

Never worked with me, I was diagnosed when I was 8 and was told straight away, but to this day I still hate myself for having ASD and I feel ashamed of having it too.


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ASPartOfMe
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02 May 2022, 1:35 pm

They reached conclusions based on a small and skewed sample. All those interviewed have obtained a degree of success, they are university students.


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“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


timf
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03 May 2022, 6:15 am

I do not know if I would tell a child they have ASD or any label. I think as a parent that discussing a particular characteristic is more relevant to the child. For example helping the child explore ways to manage anger and sudden frustration may be more relevant that discussing "melt downs".

When the child is a teen, the discussion of how neurological variants can cluster and present in a way that allows some to label them might be better understood.



Joe90
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03 May 2022, 11:30 am

I think my parents were advised to tell me. Being so my parents were totally unprepared for having a challenged child, they didn't know what was best, so they just went along with everything the psychiatrists and social workers (and whoever else was involved in the diagnostic process) told them to. They'd never even heard of autism before and didn't have internet access or anything, and all the other children in the family were 'normal' so my parents just felt alone.

I hated my ASD when I was first diagnosed and I hate it today. I get so angry about it and I keep hanging on to the hope that I was misdiagnosed, and I resent anyone who tells me that a behaviour of mine is "a symptom of autism". I hate it.


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Pteranomom
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03 May 2022, 10:05 pm

I tried to discuss the matter recently with my 12 yr old and he put his hands over his ears and ran away. Of course, he does that if you mention cats, too.

So... At this point, I think more important than what I tell him is how I treat him. I really liked the Eikona Bridge book I saw recommended here, even though my son is totally verbal, it still had good ideas that I am trying. I like the author's assertion that autism isn't a behavior problem, it's a communication problem--and I can fix how I communicate with my son!

Someday my son will notice autism or autism communities, on the internet if nowhere else, and I'll be ready to talk when he is.

Of course, it took him 4 months to work up the courage to ask for a cat... So I'm not holding my breath.



Joe90
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04 May 2022, 7:52 am

It was a behaviour problem with me, but I had ADHD too. I was verbal, and I communicated my feelings a bit too much, which turned it into a behavioural issue instead. The world could be overwhelming for me, which was why I whinged and complained and cried a lot, and people saying "oh stop whining!" didn't really do me any good. As an adult it has made me scared to express myself so I tend to hide my feelings more when around people and be more chilled and positive - and I use WP to pour all the feelings I have been hiding out (which makes me sound self-obsessed to people here but believe me I'm not, just my feelings have to come out somewhere). It's not that I don't know how to communicate my feelings, it's that I feel like I'm not allowed to, otherwise people will just yell "stop moaning!" instead of just listening to me - even if I "moan" in a matter of fact sort of tone, adding a jokey sort of tone (a skill I have actually learnt when expressing your feelings is to use certain tones of voice rather than a high-pitched whiny tone). But people still say the same words, so I just get confused and have to think before I express myself.

If it's a communication problem by the way, how do some Aspies here manage to have/make NT friends even in childhood? :scratch:


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04 May 2022, 8:06 am

I know someone I was in school with who I knew as his Mum had confided in my Mum but he didn't know as his Mum did not want it to hold him back. He is now well into adult life and is in his early 50's and I don't know to this day if he knows he was diagnosed early in life as being on the spectrum. He is a very hard worker and just keeps going like a machine but I am concerned about this aspect as I hope it never catches up on him and that he doesn't crash.
He is not intelligent but he is a nice person. Used to bully me as a child though! But he is the only child I was in school with of my age who has kept in touch though I only see him once every year or every few years. Fair play to him! I really appreciate his kindness in the occasional visits. Not sure where he lives at the moment. Wait for him to get in touch.



HiccupHaddock
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04 May 2022, 1:03 pm

The clinical psychologist who diagnosed my son was an expert on autism with over 40 years experience in adults and children with autism, and he strongly suggested that we tell my son (age 7), and not keep it a big secret. He suggested we introduce the idea to our son by reading the 'Blue Bottle Mystery' (by Kathy Hoopman) to him at bedtime, and discussing the book. The little boy in the book finds out he has Aspergers, and it's a really nice story (except for one sad aspect, which is that the boy's mother has died). We read it to our son, and he loved the book, and we suggested that he and also me have some similarities to the boy in the book (like we don't like too much change at once), and I said that I think we are both a bit like him and have Asperger's, which means we have a special kind of brain. My son seemed happy enough with that, and he loved the book, and we got him several other books by Kathy Hoopman, which he loved. He then seemed to forget about all that, and we haven't come back to it again! But I think we will revisit it at some point.

I think it's important to present it gently, and as a positive thing, not like a big piece of very serious and worrying news that will scare him. In Tony Atwood's books he says he tells people 'Congratulations, you have Asperger's syndrome' and also says he tries to help people focus on all their positive characteristics and strengths, and to build a positive self-identity. So I try as best I can to help my son by pointing out things that he's good at, and his positive characteristics, which are many. I think he has so much going for him, and is so special, and don't want him to think that Asperger's/autism defines him or limits what he can do/try in his life. I think I probably have Asperger's (though only realised until my 40s), but have tried many things and gone many places (some of which have not worked out so well, possibly due to my autistic traits making some things difficult), but I'm glad I tried things anyway. So I hope for my son too Asperger's won't prevent him trying stuff, just perhaps explain why some things are difficult when he tries them. Difficult, not impossible I hope..



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04 May 2022, 2:04 pm

Well it's probably doable for most Aspie children but nothing worked on me as a kid. I hated myself for being on the spectrum and nothing changed that, no matter how much my mum told me how clever I was or how special I was. I wasn't exactly high IQ clever, it was just I wasn't behind on most things and I was very creative. And I didn't like being 'special'. All I wanted was to be a normal kid. And it wasn't easy for me to feel like a normal kid with all these appointments I was dragged to to discuss my behaviour (or how mental I was, as I always put it), to get assessed and diagnosed, and all these social workers visiting my house. It made me angrier and angrier and I just wanted them to go away so I could get on with my life. I felt so ashamed and embarrassed about it all.

I even started using swear words when I was 8-9, about Asperger's, even though I wasn't the sort of child to swear. My brother made fun of me for having Asperger's so one day (at 9 years old) I told him to f**k off, and my mum told me off for using that language but I just yelled "shut up, Mum - I have f*****g ASPERGER'S!! !!" And I slammed off.

Nope, nothing worked on me. I didn't innocently accept things. I knew exactly who I wasn't and I knew exactly who I wanted to be. I wasn't oblivious to anything. I was arrogant about it. I'd even hit anyone who mentioned that dreaded A-word out loud in front of me. Yes I grew out of that behaviour but I still hate having Asperger's just as much as I did 20 years ago.

So in my personal experience I think I would have actually been better off not knowing about the diagnosis.


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funeralxempire
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04 May 2022, 2:20 pm

Joe90 wrote:
If it's a communication problem by the way, how do some Aspies here manage to have/make NT friends even in childhood? :scratch:


Some people are more severe than others, some people's problems are easier to accommodate.

If you were more prone to stepping on more toes than some other people with ASD (as might be more expected among more extroverted people with ASD and people with ASD+ADHD) you're likely to have used up some understanding that quieter folks might still receive.

It sucks, it's an experience that's likely to leave wounds because the nature of the condition means not really being aware of how it keeps occurring.

I think some people develop really narcissistic coping mechanisms that can grow into paranoid delusions if left unchecked.


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04 May 2022, 6:03 pm

The natural point in time to tell your child is when they've gone through assessment. Hopefully a parent has communicated with their child continually throughout the assessment process, explaining at a level appropriate to the child why they are meeting with all these strangers and what the goal is. For us, that meant explaining to my son that we were trying to figure out why he was so smart but having trouble in school. In the end, the explanation was relatively simple: your brain works differently, and the difference has a name. Knowing your brain works differently will help your teachers know how to teach you better. It wasn't anymore complicated than that.

Reality is that if you don't tell your child anything, they will reach the wrong conclusion. Your child can see he's different.

My son was 7 and hadn't anchored himself yet onto his own explanation. I would assume it is much, much difficult to add the information after your child has already anchored himself onto an inaccurate self-view. My son was still looking for his life raft; we didn't have to pull him off one he had already built for himself. He had no trouble incorporating this new information into his self-image, and continues to see it as a positive thing. He sees his ASD as what makes him, him, and wouldn't want to change it.

In contrast, his ASD girlfriend had to stumble on an explanation on her own, and had already built such a strongly negative self-image and such a drastic survival strategy that even getting a diagnosis isn't helping her course correct. For any negative one can see with knowing, not knowing has the potential to be exponentially worse. I can't even begin to describe all the issues being left on her own has created for this young woman. We don't know if she will ever overcome them.

As for if the sample is skewed, it would be a serious open question as to if my son would have made to university without understanding his own diagnosis. I honestly don't see how we could have worked past all the stumbling blocks his ASD created if we could not have had open and honest conversations about the role of ASD each step of the way, and used the benefits disability services offered. He deserved to be there, he was a top performing student once at university, but nothing in the road getting to that point was simple or obvious.

I will always advocate for telling. Always. Parents shouldn't lie or hide things from their kids. That said, parents do need to know their child, and handle things in ways that best suit the unique person.


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04 May 2022, 6:17 pm

funeralxempire wrote:
Joe90 wrote:
If it's a communication problem by the way, how do some Aspies here manage to have/make NT friends even in childhood? :scratch:


Some people are more severe than others, some people's problems are easier to accommodate.

If you were more prone to stepping on more toes than some other people with ASD (as might be more expected among more extroverted people with ASD and people with ASD+ADHD) you're likely to have used up some understanding that quieter folks might still receive.

It sucks, it's an experience that's likely to leave wounds because the nature of the condition means not really being aware of how it keeps occurring.

I think some people develop really narcissistic coping mechanisms that can grow into paranoid delusions if left unchecked.


I think natural personality also makes a difference. From a young age, my son presented as happy and curious. People were naturally drawn to him, provided he wasn't in the middle of a meltdown, obviously. If he had been able to maintain that natural outward expression without knowing what made him different, he would have always had friends.

Problem was, as he encountered more and more misunderstandings, he was receiving more and more negative feedback, and starting to lose his naturally positive outward expression. Having the ASD diagnosis gave him something to hold onto in those moments, and made it easier to fabricate a pleasant mask even as his own internal frustrations grew. He simply is someone people tend to like, but as an adult he attributes more to his successful masking than to his natural persona. The world has eaten away at his positive feelings towards life, I guess it was inevitable.

People respond positively to physically attractive and happy presences. People who present like that get more allowances from society. It isn't fair, but it's reality.


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04 May 2022, 6:22 pm

ASPartOfMe wrote:
They reached conclusions based on a small and skewed sample. All those interviewed have obtained a degree of success, they are university students.


After more than 15 years on this board, my unscientific sample is overwhelming in agreement with the article.


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Pteranomom
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04 May 2022, 10:33 pm

Joe90 wrote:
It was a behaviour problem with me, but I had ADHD too. I was verbal, and I communicated my feelings a bit too much, which turned it into a behavioural issue instead. ... If it's a communication problem by the way, how do some Aspies here manage to have/make NT friends even in childhood? :scratch:

As the author of the book puts it, a child's behaviors are downstream from what we say to a child and how we say it. If we say a bunch of stuff that just sounds like "blah blah blah" to a kid, then of course they won't behave. They'll get frustrated because we grown ups are being stupid.

My son also feels his emotions very intensely, but that's not a behavioral problem if I can help him learn good ways to express his emotions. I can't just tell him not to have emotions. My goal is to help him understand what he's feeling and learn how to make himself feel better.

To be honest, I think kids communicate with each other more naturally than adults do with kids sometimes.



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05 May 2022, 12:27 am

Whenever it is found out, sure depending on the age there may be different ways of approaching it but it should not be withheld from the child. I grew up without a diagnoses, but I still knew there was something off about me it is just I always wondered what was 'wrong' with me I had no context that I was just autistic and it comes with some struggles not every person faces. So like I felt like I was just defective maybe even just a bad person because sometimes it felt like no one liked me and maybe I deserved the bullying I got.

I think it would have been nice to be aware I had a condition that makes social interaction more difficult, but I just ended up thinking I was just inferior and bad and that maybe I even deserved bullying I got. I attempted suicide when I was 15 because of those feelings. But I was not diagnosed, my parents were not witholding it or anything but still I had autism and didn't know that and it caused a lot of emotional distress not knowing like why I was different or even what to do to at least kind of fit in better.

So I guess my perspective is an autistic kid will probably just observe they are like different from their peers, so it may help them to know what is going on.


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