Autism is genetic

[jonesonscam]

The National Autistic Society has just said something pretty significant: Autism is genetic. Not “possibly genetic”. Not “we’re not really sure what causes it”.

After reviewing 83 research papers, the NAS is now stating definitively that autism is genetic. You’re born autistic and you’re autistic for life. Most autistic people are autistic because of genes they inherited from their parents.

I think this matters enormously because for decades, autism has been surrounded by nonsense about vaccines, parenting, mothers doing something wrong, pregnancy, diet and a million other things.

It has left parents blaming themselves, and autistic people being told that something caused them to be autistic that could somehow have been prevented.

There isn't an “autism gene”. Thousands of genes are involved, and genetics is complicated. But the basic message is now remarkably clear: autism isn't something that happened to someone. It's something they were born with.

That matters because when we stop looking for something to blame, we can start looking at what actually matters: understanding autistic people, supporting them properly, and making a society that works for them.

This all feels like a pretty important shift.

When would the diagnosis for profound autism be made?

My son presented as profoundly autistic at his assessments and the entire period took 11 months from start to finish. He made no developmental progress in that time frame.

I have every confidence that if profound autism was a diagnosis all on it's own then that's how he would have been diagnosed.

Non verbal, didn't know his surroundings, didn't recognise people or himself, couldn't recognise when he had wet or soiled himself, extreme sensory sensitivities and elopement issues, required 2:1 support out of the house and needed restraint, could escape his car seat, doesn't sleep, doesn't eat, stopping breastfeeding was a nightmare because he would not transition onto solids reliably until he was 4 and we ended up hospitalised a lot between me going back to work and having to spend time away from him and him eventually eating solids because of this.

But profound autism doesn't explain where he is developmentally right now. His trajectory has changed, so I would worry that a diagnosis for profound autism at a young age, or at the most early age a parent could seek a diagnosis could also potentially be incorrect.

I'm not saying there is no merit to having clinically relevant descriptors, quite the opposite, otherwise how else can we advocate for our children? I'm just wondering if there was a diagnostic change and the threshholds for diagnosing changed, at what age do you make that diagnosis?

I'm not tilting my head. I accept what you say, your daughters needs are significant. That isn't something I think should be brushed aside.

What I am saying is yours very clearly and from what you've said your daughters needs are different to my sons. Acknowledging that isn't a bad thing. I know you've mentioned mh, my son doesn't require those services.

There have always been cut offs for services, diagnoses, support etc. I'm not pointing at your daughter and saying don't support her, I'm pointing at my son and saying please see him.

Things have to change and likely will do. I wouldn't be surprised if autism is being given out to some people who need a different diagnosis to get the support they need and don't recieve because of their autism diagnosis.

There comes a point where a child is unlikely to make any marked progress especially when we are talking about profound autism. The definitions i've seen for profound autism include iq details and very limited communication.

If your child had that diagnosis and made such massive progress, would it not be worth documenting the change and understanding why he/ she changed so much so that could be compared to others, help others? What happened? What did you do? What haven't we done? Just giving autism doesn't answer these questions, it doesn't even distinguish between my child and a dr with a family who doesn't require any support. That isn't right.

What and who is diagnosed with autism has changed repeatedly and significantly over the years. It's evolved. Why should we stick with the version we have now?

My partner and I have discussed the idea of a cure many times before, including as a result of this thread tbh.

It’d a no from us.

Our son is “profoundly” autistic. He’s 9, still doubly incontinent and has significant communication issues. He’s spent today literally throwing his pads around, having a 2hr meltdown because his grandad ironed some trousers, and refusing to eat his dinner unless it was with his hands, at his bedroom windowsill. My partner has scratched arms, he’s broken the shed door kicking it, and he’s been up since 4am.

Still, no.

His autism and level of need is so intertwined with his very being, I don’t know who he’d be without it. He wouldn’t find the same joy in bin numbers, there’s no way he’d love airplanes as much. Different sense of humour, probably far less chaotic play by now, different personality completely. Different him. And we don’t want a different him.

We work with what we have, and support him to develop the very best we can, and would carry on doing so.

Would he want a different him, do you think @ChunkyMonkey36?

I would like DS to be as he is on his very best day. I don’t want to change his personality but the rest can go! It’s different though as he doesn’t have an intellectual disability (but still very incapacitated, very unlikely to live independently).

I’m not sure what he or I would want if he were profoundly autistic. I know I wouldn’t want profound autism for myself, not that there’s a choice anyway.

Is this cause or correlation though? If autistic people find a life partner later than neurotypical people and have children later than neurotypical people then its not aged sperm/eggs, its still just inherited.

Genetic does not mean inherited.

And this is the problem with an announcement like this, people just do not understand the langauge. Its peppered all trhoughout this thread and other threads, I try to correct it but people carry on.

Without revealing the details of our family, we had already worked this out for ourselves to the point where we think the GC shouldn’t have children.

If your child had that diagnosis and made such massive progress, would it not be worth documenting the change and understanding why he/ she changed so much so that could be compared to others, help others? What happened? What did you do? What haven't we done?

Let me think on this, because you've actually given me pause for thought. I don't think I've done anything particularly different other than follow the advice I've been given and push for support where I've felt it was needed, and I don't think the support was particularly great from professional services, much of it was peer to peer learning through forums like this. I don't think I had any influence on my son's ability to develop. If development was going to happen, it just did, so we evolved our methods as his development progressed.

But then that's got me thinking about the lack of continuity of care across the UK, the enormous postcode lottery in access to services, and how difficult it would be to separate the effects of intervention and environment from someone's underlying developmental trajectory in a clinical sense.

Given how strongly development is genetically influenced, I do agree that longitudinal research comparing children with similar early presentations but very different later outcomes, including their genetics, could be incredibly valuable in understanding why those trajectories diverge.

I need to sit with this for a bit because I know there's a thought forming here but I haven't quite worked out what I'm trying to say yet. I'll come back to you.

Thank you for such a respectful discussion about a really emotive subject.

@Mangoripples

I don’t think so, though have no way of asking. He seems very comfortable in his mad little self most of the time. He rarely annoys himself - everyone else does. He’d sooner change the world around him. He’s the very centre of his own universe, too selfish to want to change himself 😂

I think he’d like a quieter mind. Sometimes his own busyness drives him to exhaustion and you can see it wearing him out. We’re hopeful meds would help that, once we get them right.

I think he’d also like a calmer emotional system, but that’s come on so much over the last few years, his self regulation has vastly improved. So hopefully, by the time he reaches adulthood he’ll at least have the toolkit available.

I may think differently when he’s an adult. But there’s an innocence, enjoyment and painful honesty in him, particularly for a child of his age, that I wouldn’t want to take from him now.

The NAS didn’t just say autism is genetic though.
They said:
“Autism is genetic. You’re born autistic and you’re autistic for life. Most autistic people are autistic because of genes they got from their parents. This is why autism often runs in families. Much less commonly, other factors can play a role, but usually in combination with genes from parents.”

They are talking about inheritance mostly when they say genetic.

Thank you so much for your lovely reply.
I was nervous asking the question, fearful of overstepping.
Your DS sounds delightful. I think you have a beautiful family.