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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Do you have a sibling with autism?

95 replies

ambereeree · 12/10/2020 19:44

I have a two and half year old asd boy and 5 year old nt girl. I feel terribly sad when he ignores or pushes her away especially as she always tells him that she loves him. How was your experience as the nt sibling? Did your siblings play with you and do you have a good relationship now?

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ambereeree · 13/10/2020 19:51

@hiredandsqueak their memories are amazing! When I took him to the paediatrician my son was the same. Spent all his time trying to get out of the room and wouldn't even look at the doctor.

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lifecouldbeadream · 13/10/2020 19:56

OP, this is quite helpful in terms of understanding what an autistic profile looks like, it’s far less linear than I think most people believe because they call it a spectrum. the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

Additionally, there are books Superhero heart/superhero brain aimed at children and might be helpful.

ambereeree · 13/10/2020 19:56

Thank you all for sharing your experiences I've had a few very dark weeks after the diagnosis even though I suspected for a while. I have nobody to ask about ASD in real life and a lot of stuff online is terribly depressing. You have all given me hope for my son and my daughter.

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ambereeree · 13/10/2020 20:16

@lifecouldbeadream thanks for the link. It's very helpful.

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hiredandsqueak · 13/10/2020 20:22

@ambereeree everyone who saw ds was warned to duck and to bring nothing that would cause damage when he launched it at your head. His aim was incredibly accurate and he could easily hit a moving target. One of his teachers once said "I think he likes me because he's only thrown at me once and he missed my head and he never misses" Grin Launching a bedside table down the stairs at the speech therapist wasn't his finest hour. Fortunately she had been before and knew crossing the threshold was dangerous.

ambereeree · 13/10/2020 20:30

@hiredandsqueak my boy is starting to communicate more and his little smile when you understand him is lovely. He was frustrated for a while and would run around crying.

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Phineyj · 13/10/2020 20:47

I have an ASD 7 year old and while she has no siblings, she has four cousins (4 to 8 years older) and they have a lovely relationship. Like a lot of DC with SEN, she struggles with same-age friendships but gets on better with DC a few years older or younger.

ambereeree · 13/10/2020 20:49

@phineyj thank you. I did not know that.

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parrotonthesofa · 13/10/2020 20:50

Thanks to all the siblings sharing their experiences, it's very insightful for a parent with asd and neurotypical kids.
I will be very mindful of not letting the asd take over the childhood.

Phineyj · 13/10/2020 20:52

I think it's because the older ones are more tolerant of differences and the toddlers just love the big girl playing with them and don't notice differences. The neighbours' 3 yo treats her as a celebrity and calls me 'DDsMum' in a way that makes it clear I am famous by association!

Calabasa · 14/10/2020 17:26

my 13yo is drawn like a bee to honey where small children, especially 6 and under, are concerned, he adores them.

I spend most of my time telling him 'be gentle!!' because he's so much bigger than they are now... but on a social/emotional level, he's not 13, he's still operating at about 8yo.

I hate that i seem to spend a lot of time telling the other mums 'he's autistic' because to him, little children are much more tolerant of him, and he finds playing with them less stressful than trying to relate to 8-13yo's.. most of them love the way he laughs when watching them on the slides/helping them up, he's really protective of them if they start playing with him.

Thankfully, so far, most other mums are perfectly accepting of him!

Caplin · 14/10/2020 17:39

Both my younger siblings were autistic. My sister was only diagnosed in her 30s as it wasn’t a thing back then. It explained a lot about her ‘difficult‘ behaviour. There was a 4 year gap and we had a feisty relationship, but we are very close now.

My brother was 6 years younger. We weren’t that close but he was a sweet kid. Unfortunately the wheels came off as a teen. He was drawn to bad things (drugs, knives, gangs). Apparently it can be a thing. I won’t go into details, but we didn’t speak for years.

planningaheadtoday · 14/10/2020 18:01

I'm very close to my sibling with high functioning autism. It's not always been easy but we share things quite intensely due to our hobby. We've always shared this hobby.

I have a clever mother, who, when we were little would buy us each different parts of the same set, so we had to find a way to play together to complete the set. These shared sets became the backbone of our shared interest.

I can reach my sister through this. Other times she drives me nuts as she absolutely cannot empathise and sometimes I just need to be acknowledged.

But I can give her the space she needs, I understand things that would seem insignificant to others because I know how she thinks.

50 years together.

My only gripe is she is over protected by the family, she's seen as the perpetual child. As a consequence of this the balance in our family is very off.

EggCups · 14/10/2020 18:51

My DM and DB and Dsis are autistic. I am not. They vary where they all are on the spectrum. My older DB is very limited, my DM functions but struggles in social situations and has no insight as to how her behavior impacts. My Dsis is like my mother but slightly better.

To be honest, and I have only realised recently how badly this has affected me and my relationships with them. Growing up I could not comprehend why we were so different, and why I became the parent. My father left when I was small.

None of them realise how hurt I feel sometimes. They just cannot comprehend it. They panic if I get upset and either explode or ignore the problem and carry on as normal.

As a sibling, the only sibling without it, I struggle. I always have. I became a people pleaser and unchallenging and don't realise how stressed or tired I am until its too late and I find myself strung out and crying.

One of my DCs has it, one doesn't. The one that doesn't is younger and very sensitive, affectionate and cuddly and is always hurt that my older DC is cold, or appears uncaring and inconsiderate.

Out of my niece's and nephews, more have been diagnosed than have not. Again, they vary with how affected/impacted they are from very severe, to more mildly.

We all just fumble along, but I can say as a daughter, sister, aunt and mother of those with autism, it is really lonely and frustrating.

BogRollBOGOF · 14/10/2020 18:59

DS1 (9) was diagnosed with HFA (would have been Aspergers) last year.

DS2 is 7. He already had good autism awareness from his classmate who is more obviously affected and has a 1:1.

They have a very close relationship and DS2 has always had a bit of hero worship and doesn't believe in age gaps Grin DS2 is naturally more physical than DS1 who also has dyspraxia and has been a good role model to him with physical skills like fireman's poles and DS1 has probably picked up social skills for DS2.

They're a good double act and both love things like minecraft. They are given choices about sporting activities. DS1 inevitably declines but is given the chance DS2 usually accepts. In the summer, I put DS2 in for some days in sports camps for more varied stimulation. There is a bit of divide and conquer for personal space.

DS1 has empathy, but it works in his own sweet way. He cried when watching Hot Fuzz when Nick Angel smashed his beloved peace lily, because he identified it with his feelings for his favourite cuddly. I remember days before his first birthday, my friend was walking wounded after a nasty car accident, and he was unusually calm and gentle with her, and instinctively knew something was wrong. Where he flounders is where his emotions and someone elses conflict. He had an altercation with another child... child made a comment about DS's hair... DS answers back with an equally factual comment about child being fat. No appology or awareness that some observations are more loaded than others. Can't give a token appology to appease child's feelings and has to uphold the logical high ground. That one was before diagnosis.

There are some awkward moments. DS1 and I missed half of one of DS2's birthday parties because DS1 was melting down, and I sent DH off with DS2 so they could get there promptly.

I do try to meet their needs fairly, as I would with NT siblings.

ambereeree · 14/10/2020 20:47

Thank you all. I'm also coming to terms with my sons diagnosis and its really frightening.
I started crying today seeing siblings play in the park the way I imagined my children would have done. My son was just going wild and running in circles.
I'm also worried about how hard it will be parenting an autistic child and am already stressed from thinking about whether I can be strong enough to do it.

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hiredandsqueak · 14/10/2020 22:20

@ambereeree as somebody 23 years down the line I can tell you that I felt just the same after diagnosis. It's like somebody has pulled the rug out from under your feet.
I can tell you that periodically I still get that feeling, birthdays are usually a trigger because I notice the differences between ds and dd and their peers then.
I can tell you you only find out how strong you are when you are up against it and the love you have for your child means that you will keep plugging away long after you thought you would give up.
I can tell you that your child will develop and grow in ways you probably can't imagine yet and so your worries for your son at two and a half are unlikely to be the same in years to come and overcoming those early worries gives you the strength and resilience to overcome the next ones.
It's really early days so be kind to yourself, if getting through the days is as much as you can manage then that is good enough just hold your boy tight and know that you are the best he could hope for because you will be once you have come to terms with the new normal.

ambereeree · 15/10/2020 15:55

Thank you @hiredandsqueak I appreciate your input.

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Iwonder777 · 15/10/2020 19:16

OP I'm rooting for you xx

One autism mum to another.

You CAN do this

ambereeree · 15/10/2020 20:28

@iwonder777 thank you
Today we went to the park and he ran in circles and then also climbed a little and we did a little bit of peekaboo where I popped my head up to surprise him and he was so happy and laughed so much it gave me a little boost. He's generally such a happy preschooler. Even his little tantrums are short. I hope he stays a happy boy.

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