If your child is autistic or has autistic traits ...

[miscelleni]

1. Do you and/or the child's father also have autistic traits.
2. How did you meet? Was modern technology a factor in how you got together?

I'm asking because I've been listening to the new BBC podcast, The Autism Curve, which is about the exponential increase in autism diagnoses. In episode 1/2 they considered the data and explored how definitions and diagnostics have changed over time. But Episode 3 takes a step back and looks at the science of whether there could also be a real underlying increase with an identifiable cause. An academic from KCL says there is a strong genetic factor to autism, but that it is "unlikely" to explain the numbers (implying, I think, that genetics are random). Another academic, from UCL, says that if there is an environmental factor to be found then it is something that began in the 1990s and is most prevalent in high income countries.

It seems to me that, since the 1990s, people with autistic traits are much more likely to find each other and form relationships due to modern technology. And this is something that has increased exponentially with the uptake of social media.

I felt fairly socially isolated as a teenager in the 80s. I managed ok at school but was averse to phoning people or taking any first steps that might turn acquaintances into friends for fear of rejection. University was difficult for similar reasons. However, I started using email in my first job in 1993 and used it to keep in touch with course-mates from uni who I would otherwise have quickly lost touch with. One of them introduced me to someone she thought I would click with. We started emailing each other and I'm now married to him. We both have traits that probably lie somewhere on the autistic spectrum, as do both of our children, though not impactful enough for us to have sought formal diagnosis.

If I hadn't met DH in that way, I probably would have ended up with one of the many single males I've met in my tech-related job over the years, many of whom have autistic traits.

These days social media brings together many people with strong interests in things, from train spotting, to bird watching, to celebrity fandom, to history buffs, to comic con fans, etc etc. Could it be that the "randomness" of genetics is becoming much less random when it comes to neurodiversity?

From our social circle autistic adults seem likely to have more children than NT adults if they do choose to have children. Maybe because family is a more important thing to them due to socialising with friends not being as easy or important as it is to many neurotypical people?
Also I don't think the increase would be that significant if we went through every adult and accurately diagnosed everyone who is ND.

The podcast does cover the diagnosis of older people, and the impact of that on the numbers - the academic jury is still out on whether there is an underlying environmental trigger or not, but if there is then it is likely to be related to, or interact with, genetics. Worth a listen if you get the chance.

My sister has a profoundly autistic DD. No autism on our side but apparently the father (no longer present) had an autistic sister. They met online, but as neither are autistic themselves I don’t think that’s a factor- most people these days seem to meet online.

1.)Yes and yes
2.) Yes again. We met on an online dating site at uni

My DH does, I do but most people can't tell. In my experience ND people tend to get together in marriage with other ND people, even if they don't know it yet.

We met at an interest group in person.

I believe that where one spouse has ND, the other has something of it going on.

@sandgrown
Research shows that older parents and especially the father's age is linked with an increased likelihood of having a child with autism. So perhaps the increasing rates of autism is related to parents have children later.
I think the idea that vaccinations are linked to autism is completely disproved by multiple studies.
Increased prevalencw of autism could be also linked to more ND people procreating with other ND people.
Autism is on a spectrum. It is subjective where the cut-off point is. Whether it is useful or helpful to diagnose more people is a question that should be asked. Happe, who designed the strange stories task to test for autism has asked this question recently as have many other psychologists.
Many people may have some autistic traits-when is this a clinical problem that requires help and when it is just eccentricity?
The eyes task by Baron-Cohen is another test for autism. You can try it online.

I am autistic as is my DS. Looking back, it is clear that my late DF was too, although undiagnosed. Neither my DM, my late DH nor my DD are - in fact they have completely opposite characters to us.

In my family, the inheritance is clearly visible. My late DF was never diagnosed and my diagnosis was only recent (after my DS's diagnosis) so of course numbers are growing as more and more are diagnosed.

Pre 1990s, I would say that children with neuro-diveristy were just expected to conform, and for many like us it was far from ideal but we had no choice - at school it became conform or be physically punished, even expelled. There was only one boy in my junior school that was expelled, everyone else chose conformity, however hard that was.

My saving grace was that I was a sickly child so my attendance record was sporadic at best. I spent my childhood reading books at home in peace and quiet in bed or on the sofa which suited me perfectly. I was a misfit, but it was a hidden problem. I didn't do well at school and failed to achieve decent grades, but later in life, post DS's diagnosis, I started to understand why and manage myself better and achieved a BSc, Masters and PhD.

I do however think that the behaviour of ND children has deteriorated over recent decades and that a lack of discipline (at home and in school), combined with the over-stimulation of modern lifestyles, leads to ND being much more of a problem. I'm not sure what the solution is, as I wouldn't want a return to the strictness of my childhood, but the issue does need addressing.

To begin with, we need to stop using ND as an excuse for poor behaviour, but at the same time, we must have compassion and patience to achieve high standards for all. I posted on a different thread, that it feels like our large modern schools are just processing children through a system focused solely on academic goals. Children need nurturing to find their individual strengths and bring out the best in them. Horses for courses and all that. I'm pleased to say that ND DS is now an adult and has found his place in the world, more than that, he excels at it, but it took years of 'unschooling' to get there. It would be a sad world if we were all forced to be the same.

Sorry, I have rambled on here, but in essence I'm saying that I believe ND is just more visible now rather than more prevalent and have provided a few thoughts to back that up.

Yes, I thought it would be something like that.
He’s private tutoring now which works better for him. I doubt he will go back to classroom teaching as I think he was quite upset by the process of trying to get the adjustment and having it treated as an illegitimate request.

Yes!
it is only something we really discovered upon having an ND child. It makes me laugh when DHs skeptical older relatives used to say things like ‘But you used to flap your hands like that all the time and repeat words and phrases over and over when you were little, and you’re fine!’ when questioning the validity of DS diagnosis 😂

I’ve also realised I have some autistic traits and strong ADHD traits. I actually think of benefit of being diagnosed younger would be for family planning. It was a shock to have a child with such severe additional needs yet it was actually probably fairly likely to happen with 2 ND parents coming together. We could have been better prepared for the possibility and I know some may make the decision to not have children- being ND yourself and trying to parent ND children can be crippling difficult.

Thank you. I don’t think I would be able to cope either (no diagnosis but am very similar to my diagnosed ds).
I find it incomprehensible how little attention is taken of this issue.
There’s a writer on autism, Pete Wharmby, who describes his own experience of not coping at primary in an open plan classroom and then as luck would have it his parents moved house and he ended up at a school in an old Victorian building with high windows, solidly built, designed to minimise distraction, and suddenly he could access education again.

I thank my lucky stars I am old …

I think it would help to be a bit more prepared for parenting, as you say. In that respect I would actually argue that being ND definitely is a D ie disorder, or at least a D for Disability, because parenting, especially the process of pregnancy, birth and breastfeeding, is incredibly taxing and prevents one from living life as one wishes which can drive a coach and horses through any adjustments one had managed to make previously - possibly even unconsciously. It can be a massive shock to the system and the overstimulation is incredible. Comparing oneself to other NT women and how they are coping - as happens in eg baby groups, ironically, pushed as a source of support for struggling mothers! - can be very damaging to self esteem.

This thread has got me thinking. Only one of my family has a formal diagnosis but I think we probably all have traits and some have traits more significant than the one with a diagnosis. When I look at extended family I see a lot of traits too and a lot of addiction which I suspect is self meditation. It got me wondering if two parents have autistic traits (whether diagnosed or not) wouldn't their style of parenting have huge impact on behaviour of their kids. A bit of the nurture Vs nature debate. How much of the behaviour is learnt? Just musing.

@FalseSpring your post is really interesting.

I also find myself wondering about people who have significant traits (I know a few) who are reluctant to explore diagnosis as - what's the point - is their view. There is one person I know well who gets immensely stressed because they don't understand people and say to me they are probably autistic but are very reluctant to pursue a diagnosis. Perhaps younger people don't have that reluctance which might explain increase in diagnosis.

There would be huge stigma for someone older. Just because of our age and thinking about reactions from older family members. Would be difficult to get over that. The word „disorder“ is very offensive to be honest. I could just about accept disability but disorder is horrible.

My husband and I met playing a roleplaying game.

My parents met at a party doing drugs. They spent a lot of time self medicating. My siblings and I all had various assessments as kids. My brother and I were put into emotional and social skills therapy (our younger sister was too young for it at the time).

As for the increase in diagnosis, there are many factors. I agree strongly that how our environments have changed is a big part, including in education - my older DD was fine until secondary, crashed throughout, and then bounced back within a year after leaving secondary school and excelling in her apprenticeship.

There is also the issue that being diagnosed with multiple neurodivergent conditions didn't used to be 'possible' before around 2013 - if you were diagnosed with autism, you couldn't also be diagnosed with ADHD or the others. Now, they're treated as co-morbid and in some places, a diagnosis of one may lead to further assessments into others. That will automatically lead to an increase.

More kids with prenatal exposure of all types are surviving than ever before, just as more premies are, and that's going to have an impact. There is a strong correlation between prenatal exposure to drugs including alcohol, and even data on certain levels of air pollution exposure in utero with higher rates of autism. More controversially, while discussed in some circles for a while, it's recently been openly discussed that due to the significant overlap in traits, greater awareness of autism, and greater stigma and difficulties officially diagnosing FASD as it requires evidence or admission of alcohol consumption in pregnancy, FASD may be misdiagnosed as ASD and/or where both are present, FASD may still be left undiagnosed even with the comorbidity well known. I think this plays a role in some cases, particularly considering most research pins FASD to be as to a bit over twice as common as ASD, and yet the support from diagnosis and after is just nowhere near. It's the easier route clinically, though obviously not the best for the person.

I personally think this is too much for immature immune systems (and there is a developing link between autism and immunity).

I'm not entirely against the idea of altering the vaccine schedule; however, my kids vaccines were delayed in large part due to a family history of poor reactions - mostly from prenatal exposure issues but we couldn't be certain enough to risk it - and still clearly autistic before being vaccinated.

"I also find myself wondering about people who have significant traits (I know a few) who are reluctant to explore diagnosis as - what's the point - is their view."

@Jewel1968 "what's the point" is as good a reason as any, but more detailed reasons are:

1. The NHS is overburdened, and other people need a diagnosis more.
2. Stigma - no point having a diagnosis if you would be reluctant to share the information and/or know many recipients of the news will privately roll their eyes and think "oh no, not another one coming out as autistic and jumping on the ND bandwagon."
3. You've lived this long without ever needing a diagnosis so what will it change?
4. For a diagnosis you have to articulate your life history and feelings with a stranger, which is anathema to many autistic adults.

@miscelleni I recognise all the points you make however one of the people I know really really struggles with people and gets hugely stressed. I can't help thinking a little bit of knowledge about themselves might help them navigate situations. As it happens I spend a lot of time helping them navigate stuff and I am no expert.

A lot of us have too much and it’s uncomfortable. It can hurt or be overwhelming, so we adapt very young to isolate ourselves and avoid it.

I would say that's me. I'm every emphatic. I need to be alone to decompress. Since peri hit i hate people touching me and I can't bare noise. I don't remember struggling with sounds and touch before that.

There's got to be some truth to this as DH is trying to get himself an assessment but it's a struggle. I truly believe he's on the spectrum and I believe I possibly have traits too. Have always thought it's what brought DH and I together. Autism.

As you rightly say, we just didn't know it yet until years later after living together for decades.

"It makes me laugh when DHs skeptical older relatives used to say things like ‘But you used to flap your hands like that all the time and repeat words and phrases over and over when you were little, and you’re fine!’ when questioning the validity of DS diagnosis."

I guess only your DH knows whether he felt fine or not. One of the podcast episodes (possibly episode 5) talks about how when autism is diagnosed in young children it is usually on the basis of how other people see them rather than on how they feel themselves. That is obviously different for adults who seek a diagnosis.

Here's a difficult question (feel free not to answer) - would you have still married him and had children with him if you knew he was autistic?

Now that more children are being diagnosed with autism, and given that it is genetic, I do wonder how the diagnosis (as distinct from the personality traits themselves) might impact their future relationships.

In order for children to grow up and be able to have relationships they have to survive. Studies have shown that up to 66% of autistic adults have thought about taking their own life, and an alarming 35% have attempted suicide. Around 1% of people in the UK are autistic, yet up to 15% of people hospitalised after attempting suicide have a diagnosis of autism.

Getting diagnosed as a child is so important as it allows access (or should in theory) to support, to learn and develop coping mechanisms that let them make it to adulthood.

I think that am ND and one of the reason I didn't have kids with my ex was because he was ASD and I genuinely thought that our kids might be severely autistic as a result. Not convinced that it works like that but it certainly put me off having kids with him. Dh is NT but our son is also ND so I didn't manage to avoid it completely but he is not as disabled by it.

Does getting a formal diagnosis unlock more support than an informal diagnosis? I can see how that would be true for ASD traits that are profound enough to warrant an EHCP, but in my experience "school support" is provided with or without a formal diagnosis - it has to be, because diagnosis can take such a long time on the NHS. There is also now self-help information online and in books which obviously doesn't require a diagnosis to access.

What do you mean by informal diagnosis? Diagnosis is a medical assessment and either you’ve been assessment or you haven’t.

In my experience school has been much more supportive and willing to put adjustments in place with diagnoisis than me just raising concerns.