Autism link research

[leanne1981]

Hi all, I attended the HSF Patients Day and we found it to be the most interesting presentation ever. Professor Hughes mentioned a possible link with Autism and as a patient with 3 out of 4 autistic children (the fourth has ADHD), as well as a media officer for the National Autistic Society, I would be most interested to know if any research is being planned for this as i don't recall whether it was suggested or not. I would be interested in taking part in a study like this and know many others who also would.

[Sue2803]

Hi there, I have SLE and Hughes, and was interested in reading your post, as my daughter has/had ADHD and my grandaughter is on the Autistic spectrum and Aspergers, also ADHD. I also have another grandaughter with Celiacs, which is also auto immune.

Would be very interested in taking part in any research as well.

[MaryF Administrator]

Yes - any research is a good idea! Mary F

[kathyD64]

Yes v interesting my nieces son age 6 got aspergers / autism.... kx

[Storky]

This is very interesting, I have Hughes and Sjogrens, my son had ADHD as a child and is Dyslexic. My father had Haemolytic Anaemia, Migraines and TIA but has never been tested for APS because he takes Aspirin daily anyway. My daughter had five miscarriages but all blood tests came back negative for APS but then I am seronegative! She also has symptoms of Raynaulds and has odd migraines.

Celiac is linked to Hughes as is Hashimotos which I also have. We definitely need soooo much more research!

[Mommaleda in reply to Storky]

My oldest is dyslexic and ADHD, my youngest asd. Interesting, would love to see more research

[jessielou]

Hi

Absolutely more research is needed, my son has autism, a cousin with aspergers, my daughter has OCD, various autoimmune conditions in family.

Dad has sticky blood, mum has lichens schlerosa, cousin has had strokes, another RA, another crohns, an aunt had multiple miscarriages, great aunt had lupus. Lots of research needed!!!!

My son has trouble with ears, headaches, hip and back pain, protein in urine, gp referring him for tests, worried!!!!

Take care gentle hugs love Sheena xxxxx

[leanne1981]

Hi everyone, thank you for the comments

I'm so sorry you're having such a worrying time with your son Jessie. My daughter with ADHD has Raynauds, juvenile arthritis and malar rashes so I'm debating asking Prof Hughes to see her when I go back. Its bad enough that so many want a successful pregnancy but thats not necessarily the end of the story with the children when we do get them here. Best of luck xx

Same goes to all of you with all your life battles.

The reason I asked the question really is obviously I have an interest in my capacity with NAS but also because Autism is primarily found in males but I have the rather rare situation of 3 girls with ASD and the 4th (also a girl) with ADHD is going through the assessment process to look at a combined dignosis. My father is Aspergers as is one of my brothers. I have ADHD. The only different between me, my ASD brother and unaffected brother is that fertility treatment was used for me and my ASD brother but not my unaffected brother and for years I assumed it was that and the genetic link to my daughters passed it on. After beating myself up for many years on what I might have done that caused my childrens, the comments from Prof Hughes started me re-thinking and it would be interesting if the once considered "untreatable" ASD/ADHD could be treated with anticoagulants in cases where a confirmed link to Hughes can be established.

I will raise the issue with Prof when I'm back at London Bridge I think.

xxxxxxxxxxx

[Mommaleda in reply to leanne1981]

Let me get this straight, they (the doctors) believe that the people that have ADHD have some type of clotting disorder or blood disorder/Hughes? That actually would make a heck of ALOT of sense! Hmmm... Please keep posting!! I'm in the states, Alabama. People here still look at me (most doctors included) like I have three hEaDs..

[Hilariew930]

This is all very informative- breaks my heart. My heart sincerely goes out to each of you and anyone with this. Timing is interesting as trying to get pregnant in the first place led to my diagnosis and while still trying, now it makes me question if I should....???? But we would like a child of our own so much. Any thoughts? : (

[leanne1981]

Autism is not something I'm sorry for at all. They are so gifted and more attentative to detail. The only real issue I personally have is having to be careful of what I say and to give precise instructions in the precise order they have to be followed but this is easily forgotten occaisionly and the results can be hilarious. One time I was waiting for a delivery and asked my eldest to "listen out for the door" so I could have a bath. When I came back down I found the delivery card and I asked her if anyone had knocked the door.. She said yes and I asked why she hadn't answered it to which she replied "you asked me to listen for it, thats what I did and now I'm telling you this". My only query over a possible treatment to give them more flexibility. My dad can't go shopping without working out how many tins of baked beans he could have bought for the same cost as the total bill or telling me if I picked a cheaper alternative how many tins of beans I could save.It is a gift in many ways, the only shame is that so many councils, employers and disability benefits don't recognised how llimiting it can be. It is a spectrum, I have one severe and one mild and they are completely different so my advice is definately don't question a decision to have a child based on a possibility of Autism and check out the National Autistic Society website for all the information you'll ever need. In my personal experience, my 3 autistic children are far easier than my 1 ADHD child, but the link query is ASD not ADHD so far.

I hope this helps. Good luck with getting pregnant

xxxx

[Karenj]

Yes! I would be interested. I also have an Autistic son.

[Hilariew930]

Leanne,

You sound like a wonderful person with amazing kids with such personality! Words can't tell you how much you just made my heart smile. I do apologize for my ignorance. I will learn more and remember your story and advice forever- I mean that. You're an individual I wish I could know in life.

Thank you, thank you.

h

[jessielou]

Hi

I would second everything Leanne says, my autistic son is so rewarding, I wouldn't change a thing, my son' s rigidity of thinking, routine behaviours can be challenging, but he is so literal, black and white, no grey areas. We laugh together lots!!!! My Hughies speak and his autism make for amusing conversations.

I have done some training in understanding the autism spectrum and there are thought to be so many contributory factors that no one really knows what causes it,

Probably not making a lot of sense today, so will shush now, just please don't be put off having a child, they are all miracles!!!!!

Take care gentle hugs love Sheena xxxxxxx

[leanne1981]

H, I'm so glad you feel at ease with what I have said. My whole mission is to raise awareness and offer support for both Autism and Hughes Syndrome and if I have been able to help and make things easier for you, then I have done what I set out. Thank you for your kind words. I only know what I do through experience and because of my work in law and welfare rights, I campaign for changes. There will be a new thread coming soon with a Gvernment petition about recognition for Hughes so I'd love it if everyone could look out for that and take a moment to sign it and put Prof Hughes hard work on the map with the health and benefits sectors.

I have already got this one for Autism going around...

epetitions.direct.gov.uk/pe...

xxxxxx

[jessielou]

Signed petition hon.

Take care gentle hugs love Sheena xxxx

[leanne1981]

Thank you so much. Theres one for Hughes on the message board now too, the Government just released the petition and its across Facebook, Twitter and over a few online radio stations xxx

[Mommaleda]

Extremely good idea! I have 2 little ones, one ADHD and the other, autism. What do they stay is the connection?

Thank you for the post!

[leanne1981]

Haha, just replied to your message before I saw this.

I think the connection is specifically around the fact that Hughes affects the brain and so does Autism. Prof Hughes said there were a lot of patients coming to see the team with Hughes who mentioned Autism. He did highlight that they said they had Autistic children but in theory it could work parallel or in the past, in my case my brother and father. Or even the person with Hughes. We really could do with full research in this area.

Thanks