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My son has just been diagnosed with Autism

Discussion in 'General ME/CFS Discussion' started by allyann, Dec 20, 2013.

  1. allyann

    allyann Senior Member

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    We have just had our son diagnosed with Autism. I know that it has some overlap with ME/CFS, but can it be passed down genetically?

    I am really having a rough time digesting this information as my brain fog is worse with the stress.
     
  2. leela

    leela Slow But Hopeful

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    @allyann, (((hugs))) to all of you! Please be very very gentle with yourself, and take comfort that you are ahead of most mothers who hear this news, as you will likely have heard of Yasko and methylation and glutamates etc--you and your little cutie have a big head start being part of PR and the neuro-immune community. At least when you read about DAN! doctors and the like much of it will make sense from the get-go.

    Moms being such a protective, relentless group, there is a LOT of support and a wealth of resources out there for you and your
    tiny man. Just resting completely with things exactly as they are, resting, resting, and you'll know exactly what needs to happen.
    You don't have to worry about knowing anything right now.

    In fact, love is the true solution, from which all the rest blossom naturally.

    :hug:
     
  3. taniaaust1

    taniaaust1 Senior Member

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    Im very sorry to hear that Ally and sadly all too common.

    Its what I warn people who have ME/CFS about when they are thinking about getting pregnant. I personally believe we are at quite a high risk of having a baby with Autism or children with Aspergers. Unfortunately there have been no studies yet done in this area but its easy to see if you start asking around in our forums and see the rates of this, its far above what it should be. ( Ive known several over the years with this illness and discussed this .. and sure enough they did end up having Autistic children. Its no coincidence thou some of these kids were fine when born but then got Autism right after vaccination (very clear symptoms suddenly). Did your baby get vaccinated?

    Autism goes with this illness thou I believe without even vaccination thou that just increases the likihood in our kids.

    I think whatever wrecks out detox ability in ME/CFS is something we are genetically predisposed too and something which also is in Autism (autism children tend to have more bad reactions to meds etc and more allergies). Both ME/CFS and autism seem to have methylation issues too. These things are closely linked. (have you ever got a methylation profile done eg 23andME report or anything like that.. it would give clues on things your son may need to help).

    Yes its passed on genetically too (or a genetic risk for it). In my family my dad has Aspergers, I have Aspergers and one of my two children have Aspergers. I know some families who 2/3 children have Aspergers. So I do think if its in a family there is a quite high risk.. and maybe double a high risk if the mother has ME/CFS (and likely to be carrying some similar gene involvement too). (ME/CFS runs in my fathers side of the family too).

    ally you are in Australia arent you? Unfortunately autism services are poor here thou there is some for children (but stupidly not much for adults when they are older. My Aspergers daughter gets no help and currently is at high risk of getting her own children taken from her as she cant care for them well, people are currently threatening to report her (and those kids probably should be removed, her house is terribly unheigenic and she never hugs, kisses her own children, in fact they get slapped if they touch her). Some families take their autistic children to America for treatment.

    Does your son seem to be badly affected? Was the diagnoses done properly? It should be done with TWO autism experts who are in agreeance of the diagnosis (this would be even more important at your sons young age).

    Feel welcome to share any problems you are having with his Autism... my Aspergers daughter had (and still has) a ton of issues. Sending you some **hugs**

    Consider contacting the autism society in your state also if you have questions.. I assume most states would have one, I know my state does (they also have libraries in which you can borrow books on the subject etc and cousellors you could talk too about it by phone etc). Having autism isnt necessarily a bad thing many who have this will tell you... we are just different, react to somethings differently and can think very differently etc. I personally wouldnt like to be normal thou its not nice not always being able to fit in as far as the real world goes.
     
    Last edited: Dec 21, 2013
  4. Beyond

    Beyond Juice Me Up, Scotty!!!

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    I have slight or mild Aspergers. Bearing in mind everything that happened in my life that in fact led me to this devastated and tortured state I would like to have born normal pretty strongly. Not in a brainless normal way, but in the not-socially-biochemically-and-emotionally-dysfunctional way. Anything that this disorder gave me it stole from me 10x more, at least as far as having a good life and enjoying yourself goes. As far as being more "intelligent" that almost everybody I know ( and everyone I know in real life anyway) it has worked well, but I could have achieved that with hard work being a happy and healthy person anyway and not prematurely in my wasted youth.

    @allyann There are support groups and forums for parents of autistic kids and teenagers that are very informative. I´ve been there fishing for info to treat myself. I agree that there are so many things in common that is very likely ME/CFS is for some is just a late onset autism, which means that the diseased state begins when the brain and body are already developed. Just imagine, if a baby got the same some people here have wouldn´t it develop abnormally and become autistic?
     
    Last edited: Dec 21, 2013
  5. S.A.

    S.A.

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    Hi @allyann ,

    I'm so sorry to hear that you and your son are going through this. My oldest has Asperger's form of Autism with definite Sensory Processing Disorder. Sensory Processing Disorder has exactly the same symptoms of B12 deficiency and as he grew up he exhibited more and more symptoms of B12 def but these symptoms were swept under the Autism rug as just being inevitable instead of treatable. This year, my son finally started getting B12/methylation treatment properly and he is doing better than he has ever done in his whole life. An estimated 20% of kids on the spectrum are actually experiencing B12 deficiency and are being misdiagnosed. I wrote out our whole story in my introductory post Mama Bear and her cubs.
    http://forums.phoenixrising.me/index.php?threads/mama-bear-with-cubs.26975/

    Best wishes!
     
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  6. Abha

    Abha Abha

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    Hi Allyann,

    Sorry to hear that your son has been diagnosed with autism.Don't despair there is Hope!
    You may find Dr Natasha Campbell Mc Bride's work/book of interest to you...site gaps.me....She is Russian by birth but living in UK .I have listened to many of her talks on youtube.She cured her own child who had autism.Since that he has been able to go to University and is leading a normal life.Her book is "Gut and psychology syndrome(GAPS)....natural treatment for autism,ADHD,dyslexia,dyspraxia,depression and schizophrenia....I believe she has another book coming out in February 2014.Dr Natasha refers to the genetic issues too.
     
  7. Abha

    Abha Abha

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    Hi Allyann,

    Further to above I forgot to mention that Dr Natasha recommends Kefir and fermented vegetables to help the gut problems.The diet must be dealt with too.This is all covered in her book and in Youtube.
     
  8. Elph68

    Elph68 Senior Member

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    Hi Allyann,

    Dr Henry Butt from Melbourne University has shown a strong link between autism and high levels of streptococcus in the system. You may like to contact bioscreen and get your little one tested.....

    Cheers.
     
    MEMum and allyann like this.
  9. xchocoholic

    xchocoholic Senior Member

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    (hugs) imho you've already received some excellent advice. But I wanted to add that I found Jenny McCarthy's book "Louder than words" both realistic and humorous.
    "Healing the 4 A's" was interesting and an easy read for a newbie.

    tc ... x
     
    allyann likes this.
  10. Nielk

    Nielk

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    Hi Allyann,

    I think you probably had a good idea that this was the case but, it is still hard to hear such a diagnosis. I am sorry that your family has to deal with this but, I have faith that you and your husband will find the way to best deal with this.

    I lack knowledge of this so I can't really give you any advice except to tell you that you are in my thoughts.

    Hugs,:hug:
    Nielk
     
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  11. SueJohnPat

    SueJohnPat Sue

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    Old post - My 15 year old son has Aspergers. I have cfs. I have been pursuing mold avoidance and have achieved great improvement. I can totally relate to my son's " stimulus overload" symptoms because when I am in a bad cfs state . It is very stressful to communicate with others.
    My son is 15 and is attending a charter high school ( not a disabled school) and his focus is on theater. He is finishing up his freshman year and is doing very well. He appeared in a play with his neurotypical peers and more than held his own. He is my pride and joy, not a tragedy at all. He is a straight A student and is beginning to enjoy socializing.
    I may have to travel in an rv to avoid pollution ( mold) to for 6 months to a year and he wants to come with me and write about it. I encourage his interests and communicate with him through them. He was always intesrestdf in films and having cfs I was a captive Audiience , but it gave me the opportunity to discuss fiminaking in depth and storylines, plot analysis etc. He is now a talented writer and editor of the school newspaper.
    I know it is very hard but you can reshape your dreams and they can lead you to places you could not have imagined . Good luck!
     
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  12. belize44

    belize44 Senior Member

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    I have mild Asperger's, but it didn't stop me from raising a child, graduating from college and working full time until I became physically challenged with ME/CFIDS. I find all the advice here for the OP interesting, and wish I had heard of it a long time ago!
     
  13. allyann

    allyann Senior Member

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    Interesting @SueJohnPat, I too see a lot of overlap in symptoms, particularly the sensory side of things. I would guess though that I would have been diagnosed with Autism as a child if it was more understood as it is today.
     
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  14. mhrps

    mhrps

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    Probably most of the chronic neuropsychiatric diseases could be passed down genetically. Autism, CFS are only a group of symptoms that may overlap. So, you can inherit symptoms , weaknesses that could be named differently.
     
    belize44 likes this.
  15. Valentijn

    Valentijn Senior Member

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    ME isn't a neuropsychiatric condition. It's a neurological disease with involvement of the muscles and immune system.
     
  16. mhrps

    mhrps

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    Yes, this was a bit unfortunate, but in my country they don't even diagnose ME/CFS :(
     
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  17. SueJohnPat

    SueJohnPat Sue

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    Cfs/me not neuropsychiatric. Before Cfs I was an introvert but I enjoyed people had many friends . After Cfs even making a phone call is extremely difficult. Have a really hard time interacting with people . It just drains the life out of me. After my experience I am convinced that increasing pollution ( No ! Not just airborne particulate matter!) is causing neurological damage whether it be Cfs, autism als Alzeihners ect.
     
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  18. Ellie_Finesse

    Ellie_Finesse Senior Member

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    Hi @allyann

    I am really sorry to hear about your son and my heart goes out to you! I also have a son who has autism, so I really do understand what you are going through right now. There is lots of help and support out there, from information and support from support groups.

    I'm not sure how old your son is or whether his has mild or severe autism, but depending on where you live in the world will depend on what school and/or whether your son qualifies for 1:1 to help him with his learning and transitioning when when there are on the spot changes during the school day. I work 1:1 with children who need specialist support in schools and my speciality is working with severe autism and behavoural. Here in the U.K. for those children that need specialist provision have health care plans, they used to be called statements. For those that qualify, it will go with them throughout there education and those that have them, are entitled to have adult support, whether it be 1:1 or small group support.

    If you are from U.K. I can point you in right direction of what support is out there for you and your child. As for a link between ME and autism, they are 2 separate conditions and in no way linked. There is, however an overlap with autism and ADHD which can often cross over into each other. It is quite common for children diagnosed with autism to have ADHD and sleep disorders.

    I know you are probably overwhelmed right now and trying to process all that is going on, but you will be ok and so will your son. You will find the strength you didn't even know you had to help your son and he will thrithe from your love and support. You will come out the other end a strong lady who can handle anything life throws at you.

    I hope this helps you Much love and hugs sent your way :hug:

    Edited; yes autism and ADHD can be passed down genetically.
     
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  19. allyann

    allyann Senior Member

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    Thanks @Ellie_Finesse. He was diagnosed over three years ago now and it has been a steep learning curve but we are all a lot more comfortable with things now. With speech and occupational therapy he is doing really well now and will start school next year. We are in Australia and will shortly join the NDIS which is our national insurance disability scheme. I am trying to get my head around it both for him and me. It will be much more of a fight to get me on the scheme as the NDIS consider ME/CFS to be a temporary illness (if so, no one told my body LOL).
     
  20. taniaaust1

    taniaaust1 Senior Member

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    Currently you wont be able to get on the NDIS scheme as it discludes ME/CFS and none of us can get onto it currently even those of us already on it for other things (like myself, Im automatically switched to the NDIS due to my Aspergers) cant get the ME/CFS included.

    Our ME/CFS socieities are currently are currently fighting to have us added to the list of things it covers and till they break ground is this area, no support for us there. One has to really wonder how our government can disclude one of the worst disabilities out there to many and currently be getting away with this.

    He'll get easily on it thou no problems. Its sad that whether you can get help or not all depends on the name of the illness you have
     

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