My Brother is Special: Autism Insights
In this episode, Marylayo is with guest, Richard (Junior) Asomaning, who shares his experience of having a brother diagnosed with autism.
Discussion points include:
- What are some of the signs/traits of Autism?
- How did your brother come to be diagnosed with autism?
- Did you ever feel overlooked in your family due to the focus on your brother’s needs?
- Were there specific challenges you faced growing up that you attribute to having a sibling with autism? How did you deal with them?
- As you’ve both grown older, in what ways has your relationship with your brother evolved over the years?
- What are the misconceptions or stereotypes about autism that you’ve encountered?
- Are there any specific strengths or unique qualities that you admire or appreciate in your brother?
- Are there any general concerns that you have related to your brother having autism
- How do you deal with those concerns?
- How has this experience shaped you as a person?
- Has there been anything along your journey that you found really helpful?
- Bible verse to support spiritual wellbeing.
Take a moment to delve into what may be 'beyond the smile' - listen in to the conversation.
Marylayo's spiritual wellbeing tip: Meditate on the bible scripture Deuteronomy 31:8.
Connect with MaryLayo:
For help in dealing with mental health related matters, please seek specialist advice and support if needed.
Transcript
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::Marylayo: Welcome to Marylayo Talks, a podcast
that discusses mental health and spiritual
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::well being.
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::Before we jump in, there may be episodes that
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::are particularly sensitive for some listeners.
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::And if that applies, then I hope you'll be
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::able to join me whenever you feel ready and
able.
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::In today's episode, I'm with guest Richard
asomaning and we're talking about autism.
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::Richard shares with me his experience of
having his brother Daniel diagnosed with
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::autism and how he grew to accept the
challenges as well as the joys that comes with
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::it.
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::Let's listen in.
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::Okay, Junior.
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::So I know that a lot of people would have
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::heard of autism.
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::They've got a general understanding in terms
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::of what autism is, but I know it's a spectrum.
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::So can you tell me what are some of the signs,
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::the traits when it comes to autism?
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::Richard: I think it will vary from each
person's experience because what I've learned
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::with autism is you've got the really mild form
and you've got the severe.
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::From my experience, especially with Daniel,
signs and traits that we kind of picked up
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::quite early on was a delay in milestones as an
infant, e. G. Him taking his time to stand up,
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::to crawl, to walk, to speak and so forth.
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::But also, even as he got a bit older, just in
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::terms of how he would engage with his eye
contact and just a lack of focus or a lack of
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::concentration when doing something.
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::So given that Daniel's one was quite mild, it
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::was still, if I could say, foreign to us as a
family because he was the first among myself
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::and my siblings to be diagnosed with it.
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::Marylayo: And so how then did the diagnosis
come?
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::Because you mentioned about how you started
noticing that delay with certain things that
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::you would expect during his development.
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::How did that lead then for something to
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::actually happen?
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::Richard: The older he got, the more worried we
became with his development.
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::So, for instance, I think with Daniel, he only
started to walk, probably at free.
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::And even his speech, we was quite concerned at
the delay.
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::We thought, okay, he's not even saying the
quote unquote basics.
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::And it was through.
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::There's this place in Kennington, I believe
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::it's called Mary Sheridan, where there's
occupational therapists and so forth.
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::And it was through that appointment where he
was diagnosed.
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::But in the lead up to that, we'd gone to
various appointments.
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::We would hear the usual, oh, some people, some
kids take longer than others and so forth.
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::But again, I think signs began to rear its
head when he started nursery, because even
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::when he started nursery, he still wasn't
making the progress that we'd hoped so.
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::Even when it came to his interaction with
other kids, we found that to be.
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::It wasn't bad or anything.
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::We just found him to.
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::He was very isolated.
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::It's like he didn't want to engage with the
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::other kids at all.
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::And it was something that the nursery staff
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::picked up quite early on, to be fair to them.
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::And naturally, we're still hoping, no, he'll
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::come round, he'll get better and better.
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::But the older he got, literally as he was
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::about to turn four, was when I believe the
diagnosis came about roughly.
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::Marylayo: And would you say that was more of a
relief or not?
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::Was it like a double edged sword?
In one sense, it's like, okay, you now know
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::there's that confirmation rather than
wondering at the back of your mind and hoping
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::for something else and therefore you can move
on.
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::Richard: Exactly.
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::But it's also that refusal to accept that he's
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::got it, because, again, he was the first.
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::And it was like how.
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::And at that time, we didn't know much about
autism, myself included.
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::We were all fairly ignorant of it.
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::And when he was diagnosed, we then immediately
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::had fears of, how's he going to grow up?
Is he ever going to speak?
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::What about schooling?
All these questions began to rear its head.
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::So it was a relief to know, okay, that there's
an underlying reason why things have been this
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::way.
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::But it was more like, yeah, it wasn't what we
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::wanted to hear.
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::Basically.
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::Marylayo: Of course, I'm going to turn it a
little bit more about then you as in terms of
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::as a family, you got that news, and you're
already talking about being ignorant when it
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::came to autism.
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::So how then did you feel as an individual, as
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::I guess, a young teenager?
How did you grow in terms of that acceptance,
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::if you have accepted it?
And how was the family dynamics as a whole
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::when it came to that transition?
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::Richard: So for me, I must have been probably
15 or maybe 15, going 16 at the time.
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::And it was heartbreaking, I'll be very honest.
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::At the time, for me personally, it was like,
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::wow, it was heartbreaking for me.
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::But I also felt heartbreak for my mom.
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::In a weird way.
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::I also felt heartbreak or sympathy for Daniel
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::as well, because it's like he's the last born
and this has happened.
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::So I'll be very honest.
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::At the initial stage, there was this hope that
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::we hope it's not going to be really severe, we
hope he's going to be able to speak and so
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::forth.
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::So I suppose with Daniel, the older he got,
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::the more we realized how mild his autism was.
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::And that was, we found that to be comfort.
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::And that was a form of comfort for us because
again, in my ignorance, whenever I thought of
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::autism at the time, it was always the severe,
always making noise, et cetera, et cetera.
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::And initially, I thought, wow, this is new for
us.
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::But to our relief, as he gotten older and as
he began to speak, as he began to engage, as
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::delayed as it was, it did fill us with hope
that, you know what?
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::He is going to speak.
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::He is going to end up speaking.
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::He is going to be able to engage, interact,
learn, and so forth.
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::And with Daniel, he's just gone from strength
to strength, because if you speak to him now,
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::although you can pick it up as you're speaking
to him generally, he's a very sociable person.
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::He's easy to understand.
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::He's got great energy.
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::He's very enthusiastic, and he himself has
embraced it as well as part of who he is.
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::But he doesn't let it faze him or he doesn't
look at it in distaste, or he's never anxious
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::or anything about it.
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::Marylayo: That's good to hear.
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::So were there any specific challenges that you
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::faced growing up that you can attribute to
having, like, a sibling with autism?
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::It could be linked to the misconceptions that
people have, the stereotypes.
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::What are the typical kind of things that
you've encountered that, you know is down to
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::your brother with autism?
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::Richard: One of the early things was telling
my friends, but also introducing Daniel to my
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::friends.
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::So, for example, maybe if I'm picking him up
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::from nursery or me and him are walking to
McDonald's or something, and I see my friend
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::or my friends or whatever, at the time, at the
early phase, it was, how are they going to
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::react to him?
How are they going to take to him?
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::How are people in public going to take to him?
Are they going to look at him funny?
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::I had all these feelings and all these fears
and concerns, but thankfully, it was the
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::complete opposite.
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::And my friends were very understanding.
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::They acknowledged him.
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::They embraced him for who he is.
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::So that was a big relief.
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::But I would say generally when I'm walking
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::with Daniel or when I was walking with him,
maybe to school or from nursery or whatever,
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::it was just things like, okay, this is just
normal to me.
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::I'm walking, but how are people going to
interact?
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::Are people going to stare at him?
Are people going to.
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::I just felt very uneasy being with him in
public.
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::And even, I'll tell you what, even bringing
him to church as well, how people will engage
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::with him how people will see him no matter
where we went, whatever public setting it was.
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::I've always had that underlying concern or
worry that I hope people don't treat him
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::different or treat him in a weird way and so
forth.
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::Marylayo: Would you say, like you mentioned
about when you would meet your friends, let's
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::just say walking down the street, did they
know that Daniel had autism beforehand?
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::Okay.
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::And so I guess how they reacted, given that
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::they knew, was a pleasant surprise for.
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::Yeah.
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::Yeah.
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::Richard: Because more importantly, they didn't
treat him different.
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::Marylayo: Right. Okay. And then over time, I'm
hearing from you that it changed in terms of
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::you being concerned about what others were
thinking.
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::Is it just because I don't know what changed
for you?
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::Richard: I think at the back of all the root
of my initial concerns, it all honestly stems
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::back to my ignorance growing up when it came
to attitudes towards autism.
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::Because I can recall in my ignorance, when I
was in primary school and we had a section for
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::children with autism, and even as a child I
thought, okay, this is a bit weird, this is
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::strange.
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::They need help, all these ignorant claims.
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::So to have experienced it myself was
definitely humbling, for one.
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::But in terms of overcoming it through time, it
was Daniel's strength of character to be
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::himself and to freely be himself.
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::But for me, also gradually allowing him to be
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::himself.
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::Because in the early phase, if he's doing
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::something which someone might consider
abnormal, I would be like, daniel, stop doing
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::that.
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::Do you know what I mean?
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::And I had to sort of overcome that and allow
him to be himself, allow him to be free.
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::And that helped.
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::Marylayo: I mean, that makes sense because I
can imagine in the earlier phases or time it
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::was you probably trying to restrain him.
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::And then after a while you realize that, you
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::know, what?
Let him be.
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::And is that you giving yourself a self talk at
a certain point in time?
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::Richard: Definitely.
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::But it wasn't even just know.
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::For instance, I wasn't the only one who would
tell him, Daniel, stop doing know.
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::My mum would do the same.
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::I would say, looking back, it was probably.
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::It could have been my sister Frida who was,
you know, just let him do what he's doing.
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::It's fine, it's fine.
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::You don't need to try to police him or
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::anything like, you know, the more she'd done
that, the more I began to understand and also
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::adopt the same approach.
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::Marylayo: And I would imagine that would have
been liberating for both you and Daniel.
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::Richard: Yeah, definitely.
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::Marylayo: So I'm just wondering about how
there might be scenarios or situations where
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::people have got children.
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::One of which has autism and the other child
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::doesn't.
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::And then because the parent's focus is on the
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::child with autism, because of their needs, the
other child may feel perhaps overlooked or be
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::trying to seek attention.
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::And I'm just wondering if that's something
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::that resonates with you at the time.
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::Richard: No, I think for me, I might have felt
that way if I was younger, if he'd been born a
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::couple of years before.
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::I think when Daniel was born, I was 13.
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::I, at that point was like, I'm no longer going
to be a mommy's boy.
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::I'm a teenager now.
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::I'm going to try and do my thing.
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::So when Daniel came for me, I adopted the
mindset of, okay, how can I help my mum?
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::How can I be more hands on and supporting her
to look after him?
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::So my mom was saying I was quite good in that
regard, to be fair, I wasn't necessarily in
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::need of.
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::I didn't feel jealous or like my space had
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::been taken.
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::No, sure.
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::Marylayo: So how old is Daniel now, if I can
ask?
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::Richard: Daniel's 18. He just turned 18.
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::Marylayo: So he's an older teenager?
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::Richard: Yeah. He's a big man.
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::Marylayo: So how would you say that your
relationship with him has evolved over the
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::years?
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::Richard: Do you know what?
I don't know if it's just that little brother
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::thing or that big brother thing where you're
always protective, but I think with Daniel, I
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::am always going to be overprotective around
him.
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::It's just in my nature because of how much I
love him and because I know of his autism,
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::there's that sense of trying to ensure that
nobody harms him or no one takes advantage of
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::him.
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::And I would say as a child, when he was a
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::child, at times I would honestly cry.
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::I would honestly cry because he was a sweet
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::child.
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::And honestly, I just wrestled with God, like,
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::why?
He's such a sweet boy.
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::The rest of us didn't get autism.
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::Why him?
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::So there was a lot of.
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::It doesn't feel fair.
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::This isn't right.
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::He doesn't deserve this.
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::And as a result, I grew in compassion towards
him more and more.
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::And in turn, I became more protective over him
when he was younger, to be very honest.
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::But as he's gotten older, he's entered that
teenage stage.
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::He's been in this teenage stage for a while
now where gladly, he doesn't really want me
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::interfering with what he's doing and so forth,
which is fine, I think, where we're at right
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::now or how our relationship has evolved is
he's come to respect me more.
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::But that hasn't been easy either, because
we've still clashed.
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::We've still clashed as brothers.
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::I'll tell him to do things.
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::He doesn't want to do it.
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::We go back and forth.
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::The usual sibling.
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::Marylayo: Sibling kind of dynamics.
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::Richard: Exactly. And I've been deliberate in
that because inasmuch as he has autism, I no
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::longer interact with him as though he has it
for me.
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::I just see him as my brother.
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::I'm aware of it, but I don't let it get in the
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::way of how I interact with him or how I treat
him.
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::Marylayo: It's a learning for me.
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::It's interesting.
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::And would you say, though, would you say that
that's because he has mild autism?
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::Richard: Yeah, I would say so, absolutely.
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::I think if his was more severe.
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::If his was severe.
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::Yeah.
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::Then things probably would have naturally been
different, I reckon.
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::Yeah.
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::Marylayo: Like earlier, you mentioned about
Daniel's personality.
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::You kind of highlighted it a little bit.
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::So what would you say are the specific
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::strengths or unique qualities in Daniel that
you admire or really appreciate how.
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::Richard: Bold and expressive that he is?
He's very bold, he's very bubbly, very
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::outgoing.
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::He's the opposite to me in that it's not that
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::I'm withdrawn, I'm just very mellow.
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::But he's just full of life.
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::Very charismatic, an entertainer, essentially,
very sociable, likes to interact with people.
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::That's something that I personally admire in
him, that there's times I'm thinking, this guy
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::seems a bit more popular than me and it's all
good.
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::I love him the same way.
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::Marylayo: You know what?
But that's even a contrast to how you
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::described him when he was a child.
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::You said when he was in nursery, he wasn't
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::very sociable with the other children.
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::So I guess as he grew older, his personality
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::and his ways changed.
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::Yeah, right.
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::Richard: Great deal.
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::Marylayo: Before, you mentioned about how you
even cry at times and you'd be like, why,
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::lord?
Because he's such a sweet boy.
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::Was that in the early days or was that for a
long while?
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::When did that stop and how did you come to
that place of stopping and questioning the
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::why?
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::Richard: Yeah, it's lasted most of his life.
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::I would say it probably stopped probably when
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::he got to secondary school because.
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::Marylayo: 1112.
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::Richard: Yeah. So I would say when he
officially started secondary school.
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::And the reason for that was because I found it
a relief.
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::And I was pleased to know that there were
schools or secondary schools which catered
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::specifically to children with autism, because,
again, in my ignorance, I didn't know, I just
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::thought all schools just had a section.
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::I never knew at the time that they were
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::designated schools for children with autism.
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::So to see him start, to see him learn, to see
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::him enjoy himself at the school was a big
weight off my shoulders because it was like,
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::okay, this was something that I was quite
fearful about because having been in secondary
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::school, you know, the jokes, you know what's
said, you know what goes on.
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::And I was very worried about him potentially
going into that.
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::So once I saw that he'd settled into secondary
school, it was like, okay, this is what it is.
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::How can we support him?
How can we help him make the most of his
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::education?
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::Marylayo: And you've mentioned how he's now
18.
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::I don't know if he's still in the education
system.
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::So then what are your fears as big brother in
terms of that next phase into adulthood?
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::And then how are you dealing with it?
Or how have you dealt with it?
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::Richard: Do you know what, as of recent, he
has begun going to school by himself only just
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::as he's turned 18.
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::And prior to that, that was a major fear for
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::me because I thought what could happen to him?
Are people going to look at him?
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::Is anybody going to try and approach him and
harm him?
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::All these natural concerns and all these fears
I had.
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::So it's been a relief to see how he's
seamlessly taking it on and he's going to
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::school by himself.
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::That's going well.
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::He now needs to come home by himself.
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::That's the next thing.
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::And to be fair, I'm not as worried as I was
prior to him going to school by himself.
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::But going forward, he's going to be starting
college and the college that we're hoping he
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::goes to, there is a section for students with
autism.
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::Again, I think on this occasion, I'm not as
fearful as I was prior to him walking to
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::school, but there is that sense of, okay, he's
going to be among more students who don't have
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::autism.
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::How are they going to react to him?
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::How is he going to react to them?
Because Daniel's a gentle giant and he's not
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::street smart either.
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::So where he isn't as street smart like myself
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::or my siblings, there is low key, that fear of
what's he going to do if someone actually
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::tries it with him.
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::I hope not.
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::But naturally, these are the things which go
through my mind going forward.
335
::Marylayo: So how do you tend to or how have
you up to now prepared?
336
::Daniel, when it comes to those key milestones,
those key phases like you talked about going
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::to school by himself leading up to it.
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::How did you prepare him for this kind of time?
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::Richard: You know what?
Credit to my mom.
340
::My mom is actually, she's been remarkable in
how she has because she's done the most
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::preparation with him, I would say, because
she's always taken him to school.
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::So the way she done it was she did it
gradually, I should say, whereby they'd go to
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::the bus up together, but then she'd allow him
to get on the bus and then he'd go and then
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::he'd call to say, he's arrived.
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::So I think we're probably going to take a
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::similar approach of him coming back.
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::Now, do you know what his school had been
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::second to none in that regard, because
inasmuch as we would speak to him and give him
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::insight on things to expect, school already do
that every day with him.
350
::So whenever we are talking about a milestone
that's coming up, he would shed light and say,
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::yeah, him and school have already been working
on it, so he's already aware he's ready, he's
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::getting ready.
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::So we wouldn't have been able to do so without
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::the help of school because school have also
given us tips on how we prepare him as well.
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::Marylayo: With you, quite well, then.
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::Richard: Very much.
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::Very much.
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::Particularly over his educational health care
plan that's very thorough, very comprehensive,
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::that looks at milestones in detail.
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::I'll give you an example.
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::Even things like promoting independence for
him as well, school have had a hand in that,
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::but we've also been very proactive in making
and ensuring that he is to become independent.
363
::Because Daniel is a bit of a mummy's boy, he's
still a bit of a mommy's boy.
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::And even me and my mom have had to wrestle
with each other to.
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::I'm like, mom, you got to let him be a young
man.
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::And for her, that's still her baby.
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::And inasmuch as she wants to let him be a
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::young man, she still sees him as her little
baby who was diagnosed with autism, even till
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::today.
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::She's coming around slowly, but it's ongoing
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::and I think it always will be.
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::Marylayo: Definitely.
373
::Especially as a mother, I would imagine.
374
::I don't know if there's anything that you
could add or share in terms of being able to
375
::kind of let go, not let go of responsibility
towards your brother, but let go of those
376
::fears, those maybe concerns, especially that
you had before.
377
::I think maybe it was a bit more evident and
felt by you, but there would still be
378
::concerns, I guess, in various ways, because
you're his big brother.
379
::What has helped you and what has supported
you, what's been of help to you, whatever it
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::may look like over.
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::Richard: The years, I think what's probably
helped me that I maybe haven't given as much
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::credit or focus on is how faithful God has
been.
383
::Concerning Daniel.
384
::I say that because going back to the
385
::beginning, we genuinely thought the worst.
386
::But at the same time, particularly from my
387
::mum, there was this sense of, he's going to
talk, he's going to be all right, it's not
388
::going to be as bad, it's not going to be as
burdensome.
389
::So being able to see that year on year, seeing
him evolve into a man, seeing him wanting to
390
::take ownership over certain things, he's still
getting there.
391
::But things like that fill me with hope going
forward.
392
::Whereas naturally, when he's a baby, you don't
know what he's going to turn out to be, you
393
::don't know how he's going to grow.
394
::So naturally you have these concerns.
395
::But when you see him grow, when you've seen
him grow up and become the person that he is,
396
::it does fill me with hope to an extent.
397
::But more importantly, whilst he's growing,
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::simultaneously, he has myself and my siblings
who are as hands on to support him and to try
399
::and steer him in that right direction.
400
::Marylayo: You have touched on this earlier,
but how would you say that you have been
401
::shaped as a person by having Daniel is your
brother, but Daniel who has autism, how has
402
::that shaped you?
And what have you noticed about yourself over
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::the years?
404
::Richard: It's humbled me.
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::It's definitely made me more humble, it's made
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::me more compassionate, particularly towards
mothers, single mothers, especially whether
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::their kids have autism or not.
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::I'm not a parent, but seeing what my mom does,
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::it's a lot, but yet there are still mothers
who have children that don't have autism and
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::it's still a lot.
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::So it's definitely made me more understanding.
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::And mind you, this is coming from someone who,
in my ignorance, I had some really unhelpful
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::views and attitudes or outlook towards people
with autism.
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::So it's mellowed me.
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::But I will say it's also made me grateful and
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::appreciative of my journey in that naturally,
there's definitely been occasions where I've
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::been like, wow, lord, I'm grateful for Daniel,
but I'm also grateful that I haven't
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::experienced what he has.
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::Not to talk down on what he's gone through,
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::and I embrace and love him nonetheless, but
it's just made me grateful for the
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::developments and milestones that I've made.
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::Yeah, I hope that came out as nice as.
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::Marylayo: I hope I get it.
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::One of the things I wanted to ask is there are
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::people who.
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::They have good intentions, but they just don't
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::know how to act on them.
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::For example, there's a lot of political
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::correctness that goes on, that's around, and
some people won't know, okay, what do I do?
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::What do I say?
How do I approach?
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::I don't know of someone close to me with
autism, so they might stay away from that
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::person just because they don't know how to be
around them.
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::So what have you found that could help, or
what would you say to someone like that in
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::terms of how they could be with someone with
autism?
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::Richard: I would tell them, be the same with
someone with autism as you would with someone
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::who doesn't have autism.
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::Because I was, once upon a time that same
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::person where I'm questioning, how do I speak
to them?
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::Will they understand?
Will they engage?
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::But you have to make them feel like a human
being.
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::You don't need to make them a special case.
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::You don't need to make them feel like a
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::special case, because, believe you me, some of
them will spot it.
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::They'll clock on, and it's not helpful.
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::And I suppose you have to ask yourself, how
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::would you feel if someone came at you in that
light?
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::Do you get what thinking about?
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::Marylayo: I mean, and that makes sense.
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::And it kind of, like, chimes with what you
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::said about how your friends, when you saw them
and you were with Daniel and how, because they
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::didn't treat him differently, that was a
relief to you, and it was a pleasant surprise,
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::and that was helpful.
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::So, yeah, that does make sense, actually.
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::Okay, so if there is someone who's listening
and they're struggling because they've got a
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::member in their family with autism, what would
you say to them?
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::And there's probably a whole load of things
you could say, but based on some of the
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::concerns that you had that you no longer have,
perhaps, what would you say to them that may
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::help?
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::Richard: I would encourage them to engage with
the support available.
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::So whether that's through school, social
workers, whoever, whatever professionals are
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::involved to aid your child's development, I
would encourage all parents to engage, because
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::from experience, my mom and we naturally also
had the apprehension of all a social worker is
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::involved.
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::Are they coming to take him away?
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::Are they coming to.
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::You've got that feeling of fear because you
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::don't know what's going to happen.
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::But we found them and professionals involved
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::to be invaluable, as in without them.
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::Honestly, we would not have made it this far
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::with Daniel and his development.
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::So I'd say to everyone listening, engage.
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::They don't mean any harm at all.
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::Engage in the support, learn about it and
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::through time.
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::What we found is the support helped us over
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::time to navigate and make the most of our
predicament.
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::But more importantly, the support helped us to
make things better for Daniel and easier for
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::Daniel, which in turn has aided his
development so far.
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::Marylayo: And I guess that applies even if
that person has severe autism.
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::It's about engaging the support that's
available that's around here.
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::Junior with that, I just have to thank you for
sharing and just talking about your
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::experience, and I'm sure it's going to help
someone out there.
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::Thank you so much.
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::Here's a spiritual wellness tip for you.
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::It's deuteronomy, chapter 31, verse eight, and
it reads, and the Lord, he is the one who goes
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::before you.
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::He will be with you.
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::He will not leave you, nor forsake you.
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::Do not fear or be dismayed.
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::Thank you for listening.
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::Do follow and join me again next time on Mary
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::Layo talks beyond the smile.
