Please or to access all these features

SN children

Here are some suggested organisations that offer expert advice on special needs.

Autism running in families...

33 replies

JKCR2017 · 21/01/2019 20:16

So it’s always been said that asd is often genetic and runs in families and it does seem likely. DS has autism, DD is being assessed. I also believe I have ASD (it’s hard to say that without an official diagnosis but I fit all the criteria).

I’ve never known my real dad. But I do know that my half sisters have DC with autism so I assumed it was some kind of genetic on my fathers side. I’ve recently found out that some of my biological fathers brothers and sisters (so technically my aunts and uncles that I’ve never met) have grandchildren with autism.

I’m not sure what my actual question is but I just feel spun out that I have a whole family of people that I’ve never met who could be affected but I don’t even know them.

I think I’m partly overwhelmed by the whole autism thing and emotional that I don’t know my father or his family! 😰

OP posts:
BlackeyedGruesome · 21/01/2019 20:54

ds diagnosed, dd just diagnosed, I am on the waiting list, my dad was very routine bound, had meltdowns and not at all social.

we also have hEDS type symptoms. I have hEDS, dd has hypermobility syndrome, ds is very bendy and probably has the gene but being male is not so effected. my mum is rediculously bendy for 80 something, dad was bendy and leaky blood vessels

hEDS make you 7 times more likely to have asd. (and increased risk of asthma, allergies stomach problems, )

elliejjtiny · 21/01/2019 20:58

I have heds and dyspraxia, dh has heds and asd. We have 5 dc, all have heds. 1 has asd, 1 being assessed, 1 has spd and 1 has a whole load of different things that we don't know if they are related or not.

BlackeyedGruesome · 21/01/2019 21:02

heds and dyspraxia always makes me take notice. I am sure dd is dyspraxic but all my concerns have been dismissed as making it all up. funnily enough we have been getting the diagnoses coming through slowly but surely. (asthma, allergies, autism, ... and yes it does appear we are working our way through the medical dictionary)

Seline · 22/01/2019 09:24

My son is being assessed for autism and ADHD, I'm diagnosed ADHD and been told I'm very likely autistic too, my mum is very obviously autistic. On my mum's side her nephew is autistic and one of her cousins is.

BlackeyedGruesome I have hypermobility and am being investigated for EDS. So does my mum, and me her and my son all have asthma and dairy allergies Shock

TinTinBanana · 22/01/2019 10:04

Ds has autism and I am sure I have too. There were older members of my family who were not good at socialising and were thought of as quirky. Perhaps they could have had autism. I

LightTripper · 22/01/2019 10:23

DD is diagnosed autistic and I suspect I may be. My Dad also now suspects he may be. I wonder about my OH's Mum too (though she had a difficult upbringing so hard to say what caused her issues: but I think it may have been her parents struggling to parent an autistic child well). DD is also hypermobile, and I think I probably was as a child (still bendy for my age).

Even OH's Mum (who had some pretty horrid childhood experiences) had a mainly nice life and my Dad and I are both very happy adults (but struggled as teens). So now I'm used to the idea it just feels like an interesting quirk about us. It makes me a bit sad that MIL could maybe have avoided her MH issues if she'd been better understood as a child, but that's just supposition on my part given I wasn't there.

livpotter · 22/01/2019 10:44

My ds is autistic. I have two cousins and an uncle (not the father of the cousins), who are also autistic on my mum's side. My brother is hyper-mobile and dyslexic.

On my DH's side there are no diagnoses but there are several very clearly autistic family members, which has only really come to light since ds was diagnosed.

I think if you also look further back in both of our family trees there were relatives who were likely autistic (code breakers, master chess champions etc). All of them are living pretty normal, independent lives.

I feel like if you have it on both sides of the family you're likely to have an autistic child.

JKCR2017 · 22/01/2019 19:30

Thanks all. My son was diagnosed asd aged 5. Having a harder time with DD, her symptoms aren’t as obvious and she doesn’t sruggle as much as DS. She also have joint hypermobility and low muscle tone and didn’t walk until 2-2.5. It’s been interesting to read how often asd and hypermobility is linked. DDs physiotherapist shrugged it off when I asked if the two were linked! 🤷‍♀️ DS also has hypermobile fingers which affects his writing skills.

OP posts:
LittleMy77 · 24/01/2019 01:05

Knowing what i do now, and my mum opening up about what we were like as kids, I would say my eldest sister is definitely autistic (also has asthma and allergies - interesting link I'd never spotted) My dad reckons he could be, altho he's not a 'classic' case, I think DH has certain traits and I have a ton of sensory issues, and I reckon if I'd have been assessed as a kid, I'd have probably been dyspraxic. We're starting assessment for DS as there's definitely something going on

All of us have been able to mask and have successful careers, but you can see the wheels come off when the shit hits the fan and brings unpredictability / illness / emotional support thats needed etc

zzzzz · 24/01/2019 01:15

This reply has been deleted

Message withdrawn at poster's request.

Thekidsarefightingagain · 24/01/2019 06:43

Just looked up hEDS and that describes the half of my family with ADHD/dyspraxia but definitely no ASD. The ASD side (Aspergers type) mostly have no allergies, amazing health and always on the go.

LightTripper · 24/01/2019 10:00

All more Aspergery types in my family. Before DD's dx I would never have said there were any autistics on either side (I think before Wing/Gould and DSMIV or whichever one extended the definition I'm pretty sure none of us would have fit the diagnostic criteria).

Following on from what @zzzzz said I do wonder whether in the long run we will (again) identify certain clusters of "types" of autism (e.g. an aspergers/EDS/hypermobile "type" or a non-verbal "type"). Breadth of Dx has its advantages and clearly there are important commonalities, but also important differences. But then I know there are lots of people who feel they fall between these two stools and there are definitely families with mixes of different "types" (e.g. Agonie Autie has Aspergers and EDS, but I think her son is non-verbal). And the fact that Kanner and Asperger identified very different types of autism seems driven more by the very particular sets of circumstances they were each working in than necessarily any real difference in the types of children that they would have been seeing (based on Neurotribes). Could be a useful avenue of research if it turns out the different "types" are useful groupings for working out support needs.

We have asthma/allergies on both sides of my family too, but like @Thekidsarefightingagain the people with the asthma/allergies tend to be (mainly) the people without pronounced autistic traits (e.g. my sister more than me, my Uncle more than my Dad, my OH but not his mum), so doesn't seem to go together here...

zzzzz · 24/01/2019 11:02

This reply has been deleted

Message withdrawn at poster's request.

LightTripper · 24/01/2019 11:12

True of allergies too I guess.

Though I think the link between hypermobile EDS and autism is clearly established?

But I don't know if there is any genetic link between EDS and more low-level hypermobility.

Interesting blog on the topic here: questioning-answers.blogspot.com/2016/07/ehlers-danlos-syndrome-eds-associated-autism.html and here questioning-answers.blogspot.com/2015/02/what-have-we-learned-about-autism.html looks like an interesting blog to explore further when time permits (hahaha!)

zzzzz · 24/01/2019 11:52

This reply has been deleted

Message withdrawn at poster's request.

Thekidsarefightingagain · 24/01/2019 12:37

I suppose that I see these conditions running alongside each other. In my family people with differences have had partners with different differences and now ds has loads of diagnoses.

LightTripper · 24/01/2019 17:07

At least some suggestions in the literature @zzzzz but I am not an expert so I don't know how credible these sources are e.g.....

www.ncbi.nlm.nih.gov/pmc/articles/PMC5867488/
www.ncbi.nlm.nih.gov/pubmed/25459977

So "clearly established" may well be an overstatement. I do that sometimes Grin.

zzzzz · 24/01/2019 18:25

This reply has been deleted

Message withdrawn at poster's request.

LightTripper · 24/01/2019 23:45

Oh yes me too @zzzzz. The world is too full of shades of grey kand every other hue) to feel confident about much!

Allforall · 03/02/2019 20:36

Very interesting thread. I have a ds, diagnosed with asd at 2, highly impacted. My brother is autistic and my sister, one is highly impacted the other is more your aspergers type. I have other family members who are aspergys. My son and my sister are the 2 most impacted by their asd, but asd does seem to be in our family...

I also often wonder if in yesrs to come, they'll revert back to cluster groups of certain types of autism. My ds is verbal and toilet trained etc at 4, he's not apsegers but not severely impacted either. There doesn't seem to be a learning disability. I can't see it anyway. So he's a bit of a mixed back, somewhere in the middle...

Allforall · 03/02/2019 20:40

One thing, as an aside, I have noticed working with children with asd and from my son and friends with sons with asd, not all but a lot of boys with asd are very big built and very strong. Big shoulders and heads and very compact. I know not all are, but most where I work are. Perhaps this could indicative of a certain cluster type of people with asd. Perhaps in yesrs to come they'll be able to explain these physical similarities to a certain chromosome mutation of some sort?

Or perhaps not of course. I'm probs waffling a load of nonsense... But it interests me all the same!

LightTripper · 03/02/2019 22:36

I think it's all very much in its infancy. I read a blog suggesting that ADOS hasn't even been tested on the wider population to get a baseline. There seems to be a lot of interesting research going on to links with motor and digestive issues that hopefully might give some more insight for future generations.

BlackeyedGruesome · 04/02/2019 00:30

the ed psych we saw mentioned that a lot of aspie jkids he sees look similar, maybe it is the tendancy to have similar difficulties with facial expressions and eye contact that makes it seem so.

there is research that puts the incidence of autism at 7 x more likely in hEDS patients than general population.

I have lost the sodding paper though and can not find it again onthe internet. I made notes, lost them as well. I think it was in a journal of rheumatology

it is very annoying, as now it is just some random person on the internet who may have read this...

Shybutnotretiring · 04/02/2019 09:22

I wonder if you're on to something Allforall. We are tall, big people. I do think, just our luck, we stand out once for size and then again for ASD 'behaviours' too.

zen1 · 04/02/2019 11:34

My 3DS are all diagnosed with ASD. Two are more ‘Aspergers’ profile, but youngest is a mixture between some Apspie type traits and some more classic autism. He also has a severe speech and language disorder and is very severely dyspraxic, has low muscle tone and elements of hypermobility. Another DS also has dyspraxia but not to the extent of my youngest. Some of their cousins have also received an ASD diagnosis, and a lot of people of both sides of the family have autistic traits.