PGD and autism

[RockinSockBunnies]

I've posted this in conception too, to try and find anyone that might have some knowledge of this topic. I know it's a contentious issue and my intention is not to upset anyone here.

Does anyone have any knowledge of whether PGD (pre-implantation genetic diagnosis) is available in the UK to ensure that only female embryos are implanted, in order (theoretically) to reduce the risk of autism? If not in the UK, does anyone have any experience of other countries that offer this? I believe that Belgium and the United States are possibilities.

I'm not currently looking to TTC (but will be in a few years). DP's son is autistic and I find it very difficult to cope at times. I know that PGD offers no guarantees, but given the odds of autisim in boys being higher than in girls, I'd like to find out more about PGD.

If those here whose DS is ASD, would you consider PGD for subsequent children?

Any advice very welcome.

I don't know the answer to your question re PGD in the UK but it is my inderstanding that it is not known definitley that ASD has a genetic basis although the incidence is far higher amoungst boys. My lttle boy was recently diagnosed and I was told that the causes are not known

I have both a ds and a dd with ASD, so I guess it wouldn't have helped me. I can understand where you are coming from though.

ds2 was diagnosed when I was 4 months pregnamt with ds3 who also turned out to be asd but to a lesser degree.
I don't think I would like to be tested because I'm not sure what I'd do with the results. I assume the reason for testing would be termination which would then make me feel that somewhere in the back of my mind I don't want ds 2 and ds3 and that is such a horrible thought to have.

i do worry about ds1 and whether anyone will take him on and want to have children with him given that we are to assume loaded with susceptible genes. But again if he were to be tested, I wonder how he would feel if the result on his potential dp came back positive. I think I might take that as I wish I didn't have my two brothers.

autism is such a massive spectrum and just because your dp has one asd son doesn't mean you'll have another and even if you did, it doesn't mean you'll have two with the same dificulties. ds2 has classic autism and is at a special school whereas with ds3 his difficulties go un-noticed by many NTs.

PS having a girl is no guarantee you won't be affected. there are plenty of autistic girls around too just not so many as boys

With PGD it would mean that only female embryos were implanted, thus reducing the odds of having an autistic child, but of course, I accept that there's no guarantee. Furthermore, there are many conditions that one cannot screen for (ASD included) that could affect us.

I don't know. I think, as I've mentioned before, the real difficulty is that DSS is not my biological child, and I find being a step-parent to him very difficult. With a biological child, there's unconditional love from the start.

Again, thank you for the replies and for not flaming me.

I don't know anything about PGD, but genetics is such an odd business. I have two DCs and it's my girl that has ASD, not my boy...

I have a ds with asd, and a dd (Seemingly NT). We are considering a 3rd but we have never considered PGD, nor would we.

I do think the fact that your DH's DS is not yours is relevant. You have never chosen to give your whole life to that child. He came as part of a conditional package I suppose. I hope you don't think that judgemental.

I'm sure you do all you can for him but you can't feel the burden and hope of having been responsible for the way he has developed, and for your part in that. I think guilt and love together are the tremendous motivators in managing a child with a disability. Some aspects of these two emotions will very likely be missing wrt your Step ds.

Have you looked seriously at the female side of your husbands family for signs of Autism. My DD is adopted and her birth mother has Autism, but was only diagnosed after I had diagnosis for my daughter. Women tend to hide it much better than men so it may never have been noticed. I think that it's also under diagnosed in girls. So I would be careful about what is being promised and research thoroughly girls and autism.

On some of the latest testing, there is very little difference between the rates of autism for male versus female. The only difference is that us women tend to disguise it better and cause less havoc in classrooms and outside life....so we don't get diagnosed. instead we get it described as depression, anxiety, ocd, anorexia, schizophrenia etc.

I'd be very wary of assuming that female = not autistic.

We don't really do flaming on the SN board. Plus, you have every right to feel ambiguous about whether you'd cope (or want to) with another dc with a disability. I think affects most people who have conceived after problems became apparent. Speaking personally, I had to be sure that I could now accept a child with severe / classic autism, if life turned out that way.

Agree with star that it is likely to be harder to motivate yourself emotionally for the massive task of parenting when it's a step child rather than a genetic one. It doesn't mean you don't care, it just means you lack the biological and hormonal supports eg the oxytocin rush after they're born, the instinctive guilt for passing on a problem etc.

The other issue is that affection is more difficult when you face daily battles and hurdles. I felt much more positive about my dc when I started to get support and help in dealing with the problems. Maybe stay with us on the SN board for a while, post about different issues and see if things gradually become clearer?

I agree AMberlight. Just dropped my DD off at NAS youth club. The girls are all dressed in trendy clothes, make up, mobile phone, uggs, perfect hair, but seem a little shy or lacking in confidence but have eye contact and smile at you. The boys on the other hand seem to have trousers that are too short, bad haircuts, and no idea of personal space, make no eye contact and won't hold a conversation with you only at you and run around like crazy. Who would you be talking to the ed psyc about if you were a class teacher?

so agree with amber light asd in females coming to light as underdiagnosed because we don't present like males...

Yup, and the outcomes for women tend to be worse, from some of the studies done so far. (Because of the zero help and misdiagnoses, probably). But it's generally easier for teachers and parents to manage us than manage a boy who may be more likely to behave in very challenging ways.

Autism has for a very long time been misidentified as a combination of being a bloke, having really bad behaviour, a low IQ and hardly any speech. None of those things are how they spot autism - those are separate things. Autism can occur with any other disability - CP, blindness, deafness, learning disability, speech and language, epilepsy, ADHD...any of them and many more. But those are all separate other disabilities in the new DSM V guidance so far.

Autism itself = social clumsiness of mega-proportion, plus complete panic if a routine changes or if life becomes too unpredictable, & often with sensory behaviours too. On that basis, it's probably as common in both genders.

Simon Baron-Cohen and team looked at every primary school child in Cambridgeshire for one study and found they were only spotting half the autistic children (predictably, the lively boys). The girls were generally never identified and were left to sink or swim (to use an expression).