Parenting multiple children with ASD, your experiences?

Plzholdmyhandforamin · 2021-03-05T17:24:49+00:00

Mother of 2, one of my children is diagnosed with ASD and is incredibly challenging (however I love him so very much - can't stress that enough) Youngest (2) has some traits but not enough to concern anybody at this stage, she's very different to DS. Very easy child and very advanced in most areas. I'm pregnant now after a contraceptive failure and unsure how to proceed. I have an appointment to discuss my options next week but I'm just trying to explore all avenues in the time being. There's an increased chance that this baby may have autism too (same father, who has autism) and if I do proceed with the pregnancy I'll be going it alone. How hard is it, realistically, to parent multiple children with ASD as a lone parent?

RandomMess · 05/03/2021 17:32

All my friends struggle tbh more so as the DC hit teen years.

Gamble66 · 05/03/2021 17:34

Its a bit shit to be honest

Original poster

Plzholdmyhandforamin · 05/03/2021 17:35

@RandomMess

All my friends struggle tbh more so as the DC hit teen years.

I expected that would be the case

Thank you though. I need to know those things.

I think I'm looking for hope wherever I can find it at the min, as my head is telling me one thing but my heart is saying another.

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FedNlanders · 05/03/2021 17:35

I have 4 with autism. Can be bad. When its good its great, when its bad, we'll its hard.

Original poster

Plzholdmyhandforamin · 05/03/2021 17:36

@Gamble66

Its a bit shit to be honest

I'm sorry

Are you on your own too? What are the main challenges you face on a daily basis?

Today has been hell for DS, he had a two hour long meltdown where he was throwing himself on the floor, throwing things, screaming, banging doors. I'm not sure I could cope with that x 2.

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Original poster

Plzholdmyhandforamin · 05/03/2021 17:39

@FedNlanders

I have 4 with autism. Can be bad. When its good its great, when its bad, we'll its hard.

Wow 4

Are they quite similar to each other or do they vary as to where they are on the spectrum / the things they struggle with?

DS is exactly the same as DSS (my partners son with an ex - also ASD) as in violent meltdowns, aggression, difficulties with verbal communication. They've followed the exact same trajectory.

DD though, if she does have autism, is the complete opposite.

I think if this baby was like DD, I would fare better than I would if it struggled as much as DS does.

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JesusAteMyHamster · 05/03/2021 17:40

I have two dc who have Autism.

In all honesty if I'd known dd had Autism first I wouldn't have had a second child however I'm glad I didn't. I find having two means that the world can't revolve around one dc and their needs and my two are a lot more flexible and able to rally along than friends who have one Autistic child in the home or a single child. Not going to lie and say it isn't hard work because it is....... But having to muddle along at times has honestly been the making of them both.

Givemeabreak88 · 05/03/2021 17:41

I have 4 children, oldest 2 have asd. I’m a lone parent. I barely cope tbh, life is extremely tough. It’s very different doing it alone than having a partner. I have no respite I never get a break.

Original poster

Plzholdmyhandforamin · 05/03/2021 17:44

@JesusAteMyHamster

I have two dc who have Autism.

In all honesty if I'd known dd had Autism first I wouldn't have had a second child however I'm glad I didn't. I find having two means that the world can't revolve around one dc and their needs and my two are a lot more flexible and able to rally along than friends who have one Autistic child in the home or a single child. Not going to lie and say it isn't hard work because it is....... But having to muddle along at times has honestly been the making of them both.

Thank you, that made me smile.

I'm really pleased things worked out for the best, regardless of the fact it can be hard.

What are your DC like?

DS is 3 at the moment, it's a difficult age as there's just no telling what he'll be like in another 3-6 years time. He has made alot of progress in some areas. I'm hopeful that he'll be able to communicate better, in whichever way that is, as he gets older which should improve the aggression and frustration.

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Original poster

Plzholdmyhandforamin · 05/03/2021 17:46

@Givemeabreak88

I have 4 children, oldest 2 have asd. I’m a lone parent. I barely cope tbh, life is extremely tough. It’s very different doing it alone than having a partner. I have no respite I never get a break.

I'm sorry, that sounds so hard.

I don't get much of a break myself and I still have OH here at the min, I won't lie the thought of having no help whatsoever is incredibly daunting.

Respect to you

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scrunchSE18 · 05/03/2021 17:49

I have two with autism. The older one is 20 now, doing a course he loves and is so much easier to be around as a result. He’s pretty independent now. DD is 12 and has always been a lot trickier in terms of behaviour. I think the gap is what has helped but I am not looking forward to the next couple of years with DD. It’s hard at the moment

FedNlanders · 05/03/2021 17:50

Mine are all quite different. Ds was non verbal till 7, quite angry. Now a very vulnerable teenager and just lost his DLA on the PIp transfer :(

Dd1 is very very quiet, very anxious and generally worries me with things like eating disorders as she is very very obsessive.

Dd2 is a bit more like ds1 and struggles at school, likes routine, struggles in friendship groups and doesn't sleep.

Dd3 is again quite anxious, very very clever and hates routine change.

GirlofInkandStars · 05/03/2021 17:52

I know several families with multiple DCs with ASD. It’s hard, very hard - even with 2 parents to share the load. It gets harder as they get older...

Branleuse · 05/03/2021 17:56

We are all autistic in this house. Id say it depends on the kids and their personalities and needs.

RandomMess · 05/03/2021 17:59

The girls I know were "ok" until pre teens and then it deteriorated quickly. Neither got diagnosed easily despite them both very much struggling and school refusing

AledsiPad · 05/03/2021 18:02

I have 2 with ASD, and contrary to the usual experience it's actually got easier as they've got older. That's because my most challenging has matured rapidly as he hit the teen stage and that process has, mercifully, stopped the violence and aggression. He is infinitely easier at 14 than he was at 7 - at 7 I was genuinely wondering if I could put him into care because I couldn't cope.

My younger ASDer is 9, and things have got harder with him as he's got older, but it's not really him, it's all the things we have to fight for, for him. School is getting harder every year, and accessing the right provision has been difficult (DS1 has always coped much better with school than DS2).

I do think it's down to the individual child, just as it is with NT children (of which I also have 2). If I had to pick which of my 4 was most challenging at the moment, it wouldn't be either of the ones with ASD! That said, if I had my time again, I'm not sure I'd have had more than 2 kids at all, never mind choosing to have more once we had a confirmed diagnosis of ASD for the eldest. I adore all of my children and wouldn't be without them, of course. But life was absolutely horrendous for many, many years.

FedNlanders · 05/03/2021 18:03

My boy has got easier, my girl has got harder.

mumwon · 05/03/2021 18:14

dc do develop but take longer - I would say to any parent that you need to think of adolescence & childhood as taking longer - try & find extra sources of social support that is either open to everybody ( we found a great theatre group) or a specific autism social group. These kind of things allowed my dd to bloom & from being a very isolated young person she became more independent & learned so much. Charities are usually the best way to access these & often The NAS gives links or check Library & internet& facebook
Re colleges research will tell you what college can offer courses that will suit your young person & allow extended education for whatever level your young person has - some may cope with uni of course, but many find that to stressful or they are simply not independent enough
When dd was in her teens I had no thought that she would get as far as she has but I know of a place not to far from us who trains young people in gardening in green houses (fairly disabled), others in computer software & some in reassembling (recycling?) computers

Everyday life can be very tough at various times but I hope for all of you that things will get better (I worked as a cm when she was young & landed up doing a fair bit of special needs - so I have a fair idea of where some of you are coming from)
I think we become experts in research as our dc grow as well as all the practical things (I had other dc one who had other quite severe health problems)
DD is a mature (in age) adult

Original poster

Plzholdmyhandforamin · 05/03/2021 18:23

Thank you all for sharing your perspectives, I find it immensely helpful.

I'm writing this after battling through the second major meltdown of the day, during which DS hit his sister.

I'm doing my best with him, accessing the support I can, being consistent with methods useful for children who have the PDA profile (I'm sure that's what he has, but his diagnosis is purely ASD)

Life is incredibly tough. I don't know how I'd manage if I had another like him.

Similarly, would it be fair to inflict his violent meltdowns on another baby/toddler. I don't think so

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Hankunamatata · 05/03/2021 18:24

Its tough and Iv a good partner. It's not just the kids. It's the endless fighting to get them the right nursery then school, the right support to be successful, no afterschool care as no one can cope with them. If you have a good support network like parents, siblings, friends it can make such an difference. Amazingly one grandparent just clicks with mine and manages them really well giving me a break.

Hankunamatata · 05/03/2021 18:25

Iv just completed 'the incredible years' course by zoom and it was very helpful. You can buy the book off amazon but def reccomend the course.

Original poster

Plzholdmyhandforamin · 05/03/2021 18:42

I'll look into the incredible years course, thank you.

I was planning to do the understanding autism one but will look at both.

I'm half way through the book The Reason I Jump and it's incredibly insightful and helps me better understand DS, but understanding him doesn't make it less difficult iykwim.

I'm holding onto hope that he improves as he gets older. DSS has improved alot and he was exactly the same as DS at 3, but even though he can communicate better now he's still an incredibly frustrated young lad and still hits his DM sometimes. Heartbreaking.

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Original poster

Plzholdmyhandforamin · 05/03/2021 18:43

It seems bonkers to bring another child into this when I'm struggling so much with DS ready. I'm gutted.

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luckynumber · 05/03/2021 18:47

I have 2 with autism, and DH got the snip pretty sharpish after youngest's diagnosis. I would really REALLY struggle with them both if I was on my own.

rawalpindithelabrador · 05/03/2021 18:48

Sorry but having just 1 with it is so bad now he's a teen I wouldn't have another one if there was any possiblity, tbh. I'd have a termination and ask to be sterilised.