Austism related to epilepsy

[Bizkit]

My son was diagnosed with epilepsy in 2010, over the past three years we have seen some changes in him, we have never really known if this was due to the epilepsy itself or medications etc.
At one point he was tested for fragile x syndrome, and because of this we started learning more about asd, which before we didnt know much about, we had noticed some traits in him, he tested neg for fragile x but this week he had an assessment and the dr basically said there were defianate concerns but he couldnt say it was autism because we have only seen these changes since his diagnosis, and these traits were related to his epilepsy and there is still research going on in terms of a link between the two.
He does not want to label him as autistic as he felt this would be unfair as if his epilepsy improves his behaviour may also, but he should be treated as an autistic child.
havent really been given any advice on how to deal with it, at the mo main problems are lack of attention in anything and frustration where he can bang his head and try and hurt himself.

Any advice/thoughts would be appreciated.
He's 10 btw

I read something this week about a high number of children with Autism also having Epilepsy.

It was in a book called Girls growing up on the Autism spectrum and there may have been a link to the research used.

I will have a look and come back

The info quoted was from Cantino 2007 and Rossi, Posar and Parmaggiani 2006 It might be worth a google

Thanks.
How much should we be telling our son do you think. Since being told this things seem to have got worse and I'm not sure if this is because what he has overheard or because we are overthinking it.
Last night he wouldn't eat his dinner and made a huge fuss over not liking certain chips because they were hard or the meat even though he has had it before and I don't recall there being a problem. He cried and got himself into a bit of a state over it, this morning we have had him come home from his bike club and moan when asked to change and started creating, then sorted that and straight away started crying loudly because a toy and moved from where he had left it.
Obviously he was in the room when we were explaining things to the doctor, some of which being not eating certain foods because of texture but isn't a major problem and also change of moving toys around etc
I'm worried he may be playing on it a bit, he also was taken down to the schools unit for autistic children yesterday and I think he knows what that means.
Obviously this is all new to me.

Have they looked at other genetic issues as well as fragile X? DD had microarray testing done and this revealed a genetic issue that underlies her autism. This particular issue is also linked to epilepsy too in a high % of individuals, though DD doesn't have epilepsy as one of her issues.

Its really difficult when you dont have an Asd diagnosis.

Dd3 wasnt diagnosed until she was 9 and I found it really hard to deal with her behaviours before dx, I wasnt able to explain why my tried and tested parenting methods werent working. I felt certain she had Asd but the Proffs kept sitting on the fence and wouldnt make a decision.

In the end she was dx'ed using a DISCO assessment which looks at issues that have been present for the persons whole life.

Could it be that the symptoms were there before but were put down to imaturity or just being a boy!!

Since Dd3 has had her dx it has been easier to work around her quirks and find her the right support.

It doesnt seem very fair for the school to be taking him to the Asd unit without him having a clear understanding of why he is there.

After the genetic testing they found an ampflication on a chromosome but as I had the same they didn't look into it further.
I've tried to think back when he was younger but nothing sticks out to me as unusual, he hit all the development milestones etc and normal boyish behaviour.
I thought his changes were down to his meds but as they now think epilepsy could cause autistic traits they are basically saying that's what it is.
Me and my 'partner' are already disagreeing on rules and discipline, we sort of always have but I think it's going to become more of a problem now.

Well tbh as he approaches his teens you need to be singing from the same song sheet anyway.

It might be an idea to sit down and decide what boundaries are important to you and how you are going to enforce them..

You need to have a clear understanding of your Ds and what he understands.

DP and I fall out over disipline regularly, he refuses to read the info I suggest to him and doesnt listen when I explain why Dd3 is being a pain. He is better recently though since I said Dd3 and I were going to leave but it isnt easy.

Good luck and keep coming on here for support

I could have written your post Bizkit and I'm so glad I found it! DS8 has epilepsy and has been on medication for a year now. During that time we have noitced more and more ASD traits and are now in the very early stages of having him assessed (waiting on appointments since beginning of Sept). Like you its unclear whether his behaviour is down to epilepsy, medication or autism.
I used to be a mental health nurse and can mostly deal with his behaviour by falling back on that training, my DH on the other hand struggles terribly and its now starting to cause much upset between us. I try and try to explain meltdowns and what it means for DS but H sees it as playing up - I can only hope when DS eventually gets assessed they can also offer H some support as he doesn't seem to hear me.
I'll be watching here with interest

Hi I'm very interested in this too. My ds is only four has been having seizures since 2.5 yrs old. He has been on meds for a year now, two different ones though with different effects. He too is showing more and more asd traits and I am thinking of pushing for assessment when we next see the paed.

I was told when he first started having seizures that as he was so young there was a higher chance of him having other issues and we were already under the paediatricians for developmental concerns. They also said that often the seizure activity may be masking him and not be surprised if behaviour got worse when seizures stopped.

This is very interesting to me the link between these too and which causes what. Now looking back ds had all the early red flags for asd, But how do they tell if its them or the meds when assessing?

i can also relate to this . ds2 started having absence seizures when he was around 8 , diagnosed with them properly at 9 . Thinking back that is also when he started to have some autistic traits . He wasnt put on medication as the doctor seemed to think that as he wasnt having big seizures it might be better to avoid medication and possible side effects .
In the mean time his behaviour got worse and he was diagnosed with aspergers aged 13 .
We recently were changed to a different doctor who disagreed with the first and has started him on anti epileptic medication now . I havent noticed any difference in behaviour since starting it but the absences have stopped .

The autistic behaviours couldnt have been down to medication , that much for us is clear but i do wonder if it is actually related to epilepsy as before the epilepsy i dont recall anything that flagged up autism or unusual behaviour .

ds2 also had an assessment that ruled out autism first and then a different psych who dsagreed and diagnosed him with aspergers .

i have always felt that ds2 isnt classic aspergers and theres more to it