The link between SLE and autism.: Just as a matter... - LUPUS UK

LUPUS UK

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The link between SLE and autism.

Angelcake profile image
22 Replies

Just as a matter of interest, how many of you guys have SLE and have children on the autistic spectrum? Is there a link or is it just a coincidence? My brother has two boys both on the spectrum, and now knowing what we know, I can see my brother as having Asperger syndrome too. I have two boys also on the spectrum but I don't think I am anything like the spectrum. I have often wondered how come I 'escaped' but I have suffered health wise for years and years and am now going through a SLE diagnosis. I'm wondering if autism is related to an autoimmune disease?

22 Replies
Melinda profile image
Melinda

Funny you should ask this, i've wondered this myself. Autoimmune diseases run in our family and my eldest grandson is autistic. I also see aspie traits in certain members of my family including myself. Like my grandson i am very sensitive to sound and other things.

Just yesterday i read an article about how many autistic children had mothers with autoimmune disease and could autism be an immune reaction. I've read quite a few articles along these lines recently.

Blueberry profile image
Blueberry

I am pretty sure - I have an autistic son...

I think the link is with autoimmune disorders rather than purely SLE - there is a known link that is garnering attention slowly between parents with MS and children with ASD as well.

Some scientists and doctors are beginning to think that ASD has a large autoimmune component, but there has been very little research into this so far.

Angelcake profile image
Angelcake

Thanks for replying! Hi blueberry, we have spoken before, and it was you in fact which made me realise a possible link! Melinda which articles have you read and do you know where you found them so I can read them too?

Melinda profile image
Melinda in reply to Angelcake

The one i read yesterday was in the New york times, Sunday review. It is titled, "An immune disorder at the root of autism". It was linked from another site. I read another one last week in the Economist. It is in the science and technology section, it is called, "Me myself and us". It's mainly about gut bacteria but it is a very interesting article. I have read many others but can't remember where.

Kalli profile image
Kalli

Hi, i have had DLE for the past 20yrs and have been treated for SLE for the past 3yrs. I have 4 boys and my 14yr old has ADHD which comes under the Autism spectrum. Your comment is very interesting and thank you for posting.

janjan78 profile image
janjan78 in reply to Kalli

Kallie I was just going to say the very same thing that my 14yr old son isn't autisitc nor aspergers but does come in on the learning disorder spectrum as ADHD......but I'm fighting an ongoing battle for my Lupus diagnosis (poor day you gota fight for such a diagnosis!) but when I look back over my childhood I see VERY similar traits in myself as a child as my son has had through his childhood & upwards but I was classed as a "very busy impulsive child that often daydreamed & disrupted the class but very clever in my own area that caught my attention" it's like reading my own school reports all over again when I read my son's..........what concerns me now is what do I put down as growing pains or do I badger the dr's (as a neurotic mother!) for more tests when I'm pushing them to the brink with myself for answers as it is!!! :O

smurfette profile image
smurfette

my daughter has lupus and my son has aspergers syndrome

Angelcake profile image
Angelcake

Before i had any clue about my own autoimmune issues, my five year old was seeing the consultant as I was concerned about his immune system. He never went more than a few weeks without being full of cold/fever. I was told that this is completely normal for children his age and not to worry. He particularly had lots of ear/eye infections. I've always had health concerns, but only found out about possible SLE very recently. Now I'm wondering if my son's lack of being able to fight off bugs is due to something else going on and not just normal five year old stuff?

Hetty007 profile image
Hetty007

I have never left a comment before, perhaps thinking what I say may be irrevelant to everyone else! I have been diagnosed for five Yeats now, major struggle!! My daughter however was diagnosed with aspergers syndrome before this, I also have two sons but see no traits in either of them.

Angelcake profile image
Angelcake

That's really interesting Hetty! And by the way, everyone on here will be interested in what you say, as we're all in the same boat!! I'm struggling getting a diagnosis too. My 8 year old is Aspeger syndrome, my 5 year old ASD.

midlifecrisis1 profile image
midlifecrisis1

This is all very interesting and if there is a connection then I've found the answer to my son's problems.He wasn't diagnosed with anything but did spend awhile being taught in a special unit due to him not being able to fit in at school.They just had him down as being anxious but years later he showed signs of anxiety if for instance there were marks on his shoes.It was extreme anxiety coupled with this thing he had about time keeping.Learning a little about Asperger's I felt he was in this spectrum.I too have Lupus so could this be the reason he has these little things that worry him?It's all very interesting and hopefully will answer questions for many of us.

lilliekinz profile image
lilliekinz

I am 22 and have lupus (sle) my 26 year old brother has autism. I had no idea of any link, but surely all these cases aren't coincidental?

Maya23 profile image
Maya23

This is very interesting. The GAPS diet that I have been recommended to try by my Nutritional Therapist was developed in response to Autism. The doctor who developed it (Dr Natasha Campbell-McBride MD) believes that auto-immune diseases and brain abnormalities are due to problems in the gut and so the diet is all about healing the gut wall. There does seem to be a link between these diseases if her theory is correct. However there are some sceptics that have criticised her work. Here's the link and you can make up your own mind:

gaps.me/preview/?page_id=35

I'm not sure what to think at the moment, but I've started introducing some of the GAPS principles to my diet, particularly boiling up the bones of the sunday roast chicken and making my own stock, then using that as a base for soups and stews through the following week. THis feels intuitively good. Lots of old traditions have used animal stocks as the basis of good health care.

Angelcake profile image
Angelcake

Thanks for the info!

redangel profile image
redangel

I am truly shocked at so many cases linking autisim to lupus. I was diagnosed with SLE Lupus 4 yrs ago and my son has Autism aged 10 and my daughter is just starting with the speach and language to see if she is on the Autism spectrum which really upsets me as i was under the impression as she was a female, the likely hood of her being Autistic was really low. I am glad i have found this site.

Melinda profile image
Melinda in reply to redangel

Autoimmune diseases run in my family. I have a grandson with autism, my eldest daughters son. My grandaughter, my youngest daughters daughter, has been diagnosed with speech dyspraxia and selective mutism. She is having intense speech therapy. I find all this really odd as previous generations were healthy!

Angelcake profile image
Angelcake

Well I had my five year old to the consultant yesterday. I mentioned how so many people on this site seemed to have links to autism. He (the registra) basically said that he had never heard of such a link and that he didn't think there was anything in it! When I questioned him further and explained that as so many people having the same symptoms have children with similar conditions and I didn't think it was just a coincidence, he didn't seem that interested! When I then said, "Ok then, let's put it another way. I have an autoimmune disorder, as has my Aunty. My brother, his two children and my two children are ASD, what is the likelihood that my children will also have autoimmune problems?" To which he said, "They almost inevitably will have!" Quite ironic really as the reason I was there in the first place is that last year, (before I had any clue about my own autoimmune problem) I had my son referred as I was concerned about how he was always poorly and could never seem to fight anything off! He then said as my son seemed so much better, and had put on a bit of weight, he was discharging him! Bang goes any chance of the link being investigated there then!

llm1970 profile image
llm1970

This is very interesting and I did mention it to my consultant when I met with him but he was quite shocked to hear such a claim. I am seeing my sons psychiatrist next week and will talk to him. I have SLE and also another Auto Immune Disease PBC my dad has Sclorederma (probably not spelt right) and my 12 year old son has diagnosis' of ASD/ADHD and ODD. It has taken me years of fighting for my son to get what is right for him and to be honest if it was put down to me passing it on to him I really don't know what I would do.

kittykat68 profile image
kittykat68

hi guys how wierd is this ive been a member on here for about a year but never commented but having read about the aspergus links im flabbergasted my 14 year old son is of the autistic spectrum/odd/adhd/asd , Since the age of two i fought until he was 6 years old 2 get help all the time i was walking around with LUPUS it took 10 years to diagnoise me, since ive have been diagnoised i have been very "paranoid" about my son as he has lots of aches and pains /ibs/bones hurt and now after rescent blood tests hes anemic, i thought it was me just thinking because i have lupus he will automatically have it obviously thats not the case but when i sat down and surfed the net and family medical history its highly likely that my 70 year old mother and 75 year old aunt have lupus but have been told by there gp that at there age its not worth opening a can of worms, i dont trust any drs and i ALWAY get a copy of every medical report ie when i go 2 rhemy/dermy/thoracic meds and they write to you dr after i always have a copy and i believe that helped me win dla after fighting for 2 years and adjouned tribual for 6 months to gather more medical evidence!!!! is anyone else so distrusting of g.p.

Angelcake profile image
Angelcake

Well I'm not actually diagnosed with SLE but I really do believe I have it. I have been told by the rheumy that I have an auto immune disorder, but he won't stick his head on the block to say what yet. So basically I'm 'walking' around with many horrid symptoms which are making me feel so poorly, I keep losing feeling in my legs and have horrible back pain, but am not on any meds at all because the consultant won't commit. I'm doing the best I can to look after my high maintenance ASD kids and feel like the doctors don't actually care. And to cap it all off, my boys' autism consultant recently discharged both of them and told me they won't get any help until they are in the secondary school (when one was still four and the other seven!) so yeah, I have no faith in them either. I'm tired of fighting for my children and getting absolutely nowhere, I have no energy left to fight for myself and feel like my body is deteriorating before my eyes but the doctors are sitting back and letting it happen. It's just wrong.

kittykat68 profile image
kittykat68

angel cake snap, ive always been a very strong independant charactor but now im just a hermit that has lupus fog and no energy to fight , i have fought sincemy son was 2 to get a dignoises AND hes 15 now , hes also how educated , he didnt go to junior school at all i taught him at home as the "school" didnt have time for one to one he walked into main street senior school and attented for 3 years but finally senco let him down again and hes back to home educated with a tutor please keep on and on and search the web i took childrens lawyers and MIND with me to all my school meeting but its said that we have to FIGHT when we are soooo ill :(

kittykat68 profile image
kittykat68

*home * sad

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