Eczema/Autism, the untold story

Eczema, yes, we hear about it a lot. It has happened to someone who knows someone whenever I speak about it. Most of the time this is how I hear about it : “My cousin had it, but nowhere near as bad as yours”

Now, that is not one of the most pleasant things to hear, when you spend your days struggling to come to terms with this demon called eczema. Most days the only thought that gets you through is “Someone out there is worse off than him” . Imagine that thought smashed with a sledgehammer…

The eczema which plagues two of my sons has not officially been linked to Ectodermal Dysplasia but stories from friends, also affected by both, tend to point to a “yes”.

Our fight with eczema has been hard. Not only did I have a child itchy beyond description, trying to tear his skin off. I had a child who, because of  Autism, had no way of understanding what his body was doing to him. The four years he was undiagnosed were absolute hell for us.

It started so innocently one morning. I placed all his breakfast on the kitchen bench as usual and he was playing in the livingroom. He was 2 years old. As I talked to him and told him I was making his weet-bix he looked up and started screaming. He could not be settled at all untill my Husband said to him, “show me!” So, the precious little man, picked himself up from the floor, walked backwards from the lounge to he kitchen, put everything I took out for his breakfast back into the proper place and walked backwards, back to the livingroom. “Oh” we thought, but that wasn’t the end.

Little man then got up again, walked forwards to the kitchen, laid everything out in the colours he wanted and the place he wanted and went back to sit and play. Only then did he look up and smile, giving me the go ahead to continue.

We put a system in place at home where we gave him a visual choice of two things before we continued with our routine. That worked well, except for the eczema. Whenever he was inflamed, he could not cope with any other input than what the stimulus was with the itch. It was so overpowering that he had absolutely no room for any other interaction with anyone. If someone then wanted to talk to him or even touch him, the self-destruction would begin.

You must understand, at this stage he was not diagnosed as Autistic. We were looked at as “weak” parents, anxious and overbearing, as “wanting” to have something else wrong with our child, encouraging his destructive behaviour by giving in to it…All sorts of barbaric things. We went through two years of hell at preschool where I would leave a screaming child in the morning to pick up a screaming bloodied child in the afternoon. “Oh, he had a good day but he didn’t want to do this/that and we said no so he went weird” Is how it would be explained. We were given so much bad advice that he would be hospitalised by the outcome more often than not.

Hospital was heaven for him, routine and nurses at his beck and call. This only made others look at him as a spoilt kid who knew how to “play” the system. “They are smarter than you know” “He is playing you like a fiddle” ever more hurtful words to pile on a mother’s back who thought she was not worth the air she breathed. I couldn’t help my child, I was a failure. I was even condemned for letting him keep his dummy (pacifier), the ONLY thing which stopped his “attacks”.

He was eventually diagnosed “Oppositional Defiant” by a well-meaning psychiatrist, she may as well have signed his death warrant. Just in time for him to start school it was the most awful time it could have happened.

His first three terms of Kindergarten, his days started thus;

“I don’t want to go to school!” I would ignore this to the best of my ability and keep with the routine. I had been told, he is oppositional so I have to ignore all of his pleas or I’d be seen as weak.

“I don’t want to go to school…..” crying now, sobbing and starting to itch. 

By the time he’d be dropped off at school, he would be so fired up he’d be scratching bloody furrows into his already tortured skin. This would continue up to an hour at school after I’d drop him off. The Principal (who deserves a medal) would watch him in his office as he destroyed his own skin and kept him from harming himself more.

He would “escape” from school to try to go home…we were a whisker away from having him home schooled.

Then, salvation came in the form of an Autism outreach worker. My pleas for another diagnosis had finally been heard and she came to assess him for a whole day.  Eight hours, she sat and observed him at school, she correlated information his teachers gave her, the principal was interviewed for his observations and my Husband and I were also questioned for 2 hours.

I remember my husbands words like he just said them today “I am scared to go back. I don’t want to be told again that it is all our fault” my heart broke as I heard those words. I was feeling the same apprehension but we had not been able to communicate that to each other. Little man took up so much time.

Together we walked back to the principal’s office, hand in hand. We sat and chatted to the principal as we waited for the others to come back. The two ladies from Aspect, the Autism center for NSW, came back in, smiled as they sat down and the assessor said, “Mr and Mrs Kelly, your son is Autistic.”

to be continued…

With love & support,

Tarja Kelly

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15 Responses to “Eczema/Autism, the untold story”


  1. 1 Library girl 02/04/2010 at 11:29 am

    Hey Sis – yes, it’s me 😉
    Found your blog. Man oh man, my life with kids was waaaayyyyy easier. In fact, my life to date! Way easier.
    I love the way you manage to keep your sense of humour and still find the joy in having children.
    Keep smiling, chick!

    • 2 tarjakelly 02/04/2010 at 11:52 am

      Thank you Sis ❤
      This is why I want to educate. Some mice need to roar sometimes but they are too scared to. I am the mouse who decided enough is enough 🙂
      Humour is what keeps us alive here. The children are the life blood of our family. With support from family like you, I will keep on living and loving for as long as I can.

  2. 3 Carrie 13/01/2011 at 6:24 am

    Tarja,

    WOW your words could easily be mine! I have been told that “my children’s behavior is not them, the problem is me.” Also things like “you play favortism with your girls”. The truth is, I do favor one, but it’s the oldest, not the youngest like everyone says. The youngest has had severe Eczema since 2 months old. We have done allergy testing but continue to have break outs for what seems to be no reason at all. Plus she is so destructive to things she touches and is completely spontaneous in everything she does. No thinking it through. The pediatrician finally took me more serious and agreed to discuss in length her actions (she is now 3+ years old). Her diagnosis was that I wasn’t stern enough or consistant enough with her. That she did not have autism (based on a 15 question test) and is most likely early stages of ADHD.

    She doesn’t have most of the basic characteristics of autism, and seems social in all other ways, just has the will to do what she wants when she wants without consideration of anything. Like climbinb fence and pulling self up with gutter to sit on the roof!!! My 7 yr old watching of course. I’m thankful I was in that part of the house and heard the roof noise so I could check!

    Reading your words about feeling very alone and tired of people pointing fingers at you makes me cry, it was sort of a relief to know I’m not the only one who feels this way in regards to my childs actions.

    Thank you so much and please updated with what you learn. I’ll try to do the same. Insisting on going over my Pediatrician’s head and speaking to a Neurolotherapy specialist.

    • 4 tarjakelly 13/01/2011 at 9:40 am

      Carrie,
      I am so glad I have made you feel not so alone. It is a hard road us mothers travel and the last thing we need is a feeling of isolation. That is my main reason for writing. I will update as I can, I promise you this!
      I am very fortunate that my Pediatrician listens to me and that makes it easier for me to listen to him so when diagnoses clash, we both work on looking at the possibility that it could be something totally different.
      I wish you all the very best in your continuing journey and hope we will be able to catch up on better news soon.

  3. 5 val 14/05/2011 at 6:44 am

    Please consider eliminating all nightshades from your children’s diets. This may be causing the eczema. Also, a gluten free diet may help your child with autism. I hope you can benefit from my experience.

    • 6 tarjakelly 15/05/2011 at 5:39 pm

      We have cut out Potato, Tomato, we don’t eat Pepper, Capsicum or Eggplant. We have gone on a very low alkaline diet for years now, to no awail. We are not re introducing the food because we see the effects immediately. The Autism we have been able to assist with daily fishoil. If I were to take gluten out of their diets as well, we would be reduced to eating nothing. We can’t have aged meats and red meat because of the agents in there as well. Thank you for your suggestions though, I am sure they will assist someone who has read this.

  4. 7 lisa 20/10/2011 at 7:45 am

    My son has had eczema since he was born, though the symptoms were not yet visable until he started crawling. He now shows signs of autism, I have talked to his doctor about his strange actions; such as gazing at chairs and other household items. My question is, does kids with eczema have autism? My sons doctor said that his signs may seem to be the same as that with people with autism, she said that he does not have autism. If he does not have autism then why does he show all the signs? I have searched the internet for signs of kids with autism and he has most of the stmptoms. I am a single mother and this has been a huge struggle for us. I have been told that I just need to be harder on my son. I have also been told that he is bad, and other thigs also. I have looked on the internet to see if anyone else has had the same problems as I have. I really would like to know if autism is related in any way to eczema, or if they are different? My sons doctor says, “people with allergies can show some of the symptoms as autism patients, but does not mean that they have autism.” Should I seek a second opinion for my son?

    • 8 tarjakelly 20/10/2011 at 8:45 am

      I am not certain that eczema is linked to autism but I am not an expert in this field either. My writings come from the observations of my children. I would definitely seek another opinion but I don’t know how well the diagnosis would be. If your son is still very young it can be difficult to pinpoint the autism characteristics as the more visible signs come when the child is school age. With my own, I noticed that whenever I kept my sentences short, sharp and repetitive the chances of listening and understanding increased. So, instead of babbling on and saying “lets get ready, we’ll go for a nice drive to the store and then home again and we’ll have lots of fun in the meantime” I would say “come on, car, now” and he would be so happy to come and sit in the car.
      What I learned (but isn’t documented as proof positive!) is that when the embryo is formed, the brain develops from the same stuff the skin is made of. They split into ectoderm and misoderm at some stage. My theory that if there is an inherent “mistake” in the ectoderm and it is strong enough to “survive” the split, it could be linked. But, that is MY theory and I have NOTHING to support that.
      For now, the best advice I could give you is, observe, take notes, be patient and most of all, Believe in yourself! You are the one person who lives every minute with this child, YOU are the only expert on your child, you will have to be the advocate and make sure that you have all the facts on your child in order for the “experts” to be able to study them. It’s a long road and it feels lonely but please know there are others in the same boat and we will all be there for you come diagnosis or not.
      All the best on this, I hope it helped a little bit.

  5. 9 Neha 27/12/2013 at 6:51 am

    Did you autistic child had speech delay? Cause i have a neighbor’s 2.5 year od kid who speaks some mono and some bi-syllables like ma, mama, dada, sometimes daddy, kaka, etc. And of-course he isn’t diagnosed as autistic.. But here is the similarity, he has severe eczema, all over the body and scratches a lot. If u can assist, i’ll discuss more

    • 10 tarjakelly 28/12/2013 at 6:48 pm

      He wasn’t speech delayed but he was socially delayed. He wanted to play with children but didn’t know how. The eczema was scratched worse whenever he was upset, angry or sad.

  6. 11 Neha 27/12/2013 at 6:53 am

    Please add a ‘as yet’ to the autistic line.. i think he is, after reading your posts but i donno.. just left a quick question

  7. 12 kids beds 28/08/2014 at 12:59 pm

    This is the perfeft webpage for anyone who wants to
    understand this topic. You know a whole lot its
    almost hard to argue with you (not that I really would want
    to…HaHa). You defiitely put a new spin on a subject that has been discussed for a long time.
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  8. 13 Bronia 28/05/2015 at 11:30 am

    Hi Tarja, wow! This is the first personal blog I have found of a child with severe eczema being also diagnosed with autism. I completely feel for you and empathise with you. I know this journey only too well. My daughter is 4 yo with severe eczema since 6 weeks of age. She has both speech and language delay. At her speech therapy appointment yesterday, after some testing the speech therapist has advised that she would like her to see a cognitive psychologist. Her results on the testing were not good for her age. As a family we have three children, two boys in school who are perfectly healthy. And our little girl who has meltdowns every evening for two hours (and has for a long time.) It starts with scratching and ends in screaming. It is very difficult to get her to go to bed, and do the bedtime routine due to the meltdown that occurs every night at that time. If something is not right, like your son with his breakfast, she completely loses it. However she doesn’t have issues socially or with eye contact or physical touch, hence why I didn’t think she is autistic. However I’m looking forward to seeing this psychologist and getting a diagnosis, whether that’s autism or something else. I read somewhere today that a study was done and they found children with severe eczema are three more times likely to have autism than other children. All the best for your son and his treatment. 🙂

    • 14 Lisa 07/06/2015 at 10:30 pm

      My son has both eczema and autism. He is 6 years old. He has suffered with eczema since he started crawling. I have not had to deal with any tantrums out of him as of yet. However, he does flap his hands in front of his face a lot. He also stares at his hands in different angles. He use to line things up. He does not do this any more. In fact, he use to move my dinette chairs from around my dinette table and line them up and walk along side the chairs starring at the chairs. I could not keep my chairs under my table. Thank goodness he doesn’t do this any more. He is fascinated with technology right now. I purchased him a playstation and all he wants to do is master the Sonic game that I purchased him. He even talks in detail about the Sonic characters. Prior to the playstation, he was fascinated with computers. I was told that he was at the higher end of the spectrum. I never considered eczema being linked to autism. Eczema runs in my family. I do not have eczema myself, but a lot of people in my family do have eczema.

  9. 15 Sarah 13/10/2015 at 11:28 pm

    Wow this reminds me off my little girl and our family she’s just started school and we are currently going through CDC assment but being told she can’t be this due to her great social skills etc etc her hands have never been so bad since she had started school she attacks them as she won’t tell anyone at school how she is feeling but at home she refuses to go but never shows it to them I feel I’m a loosing battle


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