Even Before a Diagnosis, a Mother Knows

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Part One of a Five-Post Series about one woman’s experiences with her son who has autism.

I will forever remember the day…

It was a beautiful Saturday afternoon, and my 3-year-old twins and I were off to a birthday party for one of our closest friends. When I pulled up my heart sank…it was at a duck park.

To most the location would mean nothing, but my stress factor rose immediately. Mikey and Tommy got out of the car, and Tommy immediately ran over to the ducks. Mikey’s attempts to convince his brother to join the other kids proved fruitless.

My friends saw my angst as I was pulled in separate directions. They took Mikey under their wing for the millionth time. For more than an hour, Tommy chased the ducks, over and over. My heart sank with every time I tried to get him to join the party… these were his friends – what was going on?

Deep inside I knew. All my worries about Tommy ran through my head... his barely having any words, lack of eye contact, extreme picky eating, tantrums, complete ignorance when someone was speaking to him, twisting his wrists, focus on certain toys, his knowledge of our driving routes and the anger when we did not go the way he wanted…

And most of all, the way he hugged me.

As the day went on, Tommy left the ducks once and joined the kids for some play with musical instruments. I was elated, but just as I sighed to myself, Tommy grabbed his ears and dropped to the ground in the midst of the crowd.

My heart sank and tears welled in my eyes as I ran over to pick him up. Tommy immediately ran back to the ducks and remained there until the end of the party.

In that instant, I knew without hesitation Tommy had autism.

Autism had been on my mind since Tommy was about one year old and cried through his first birthday party. The word was that needle in my stomach telling me the twins were developing differently, but the doctors would tell me… He is a twin. He is a boy. You need to discipline him. Don’t worry.

As I look back there were always signs. Since he was mildly affected, it was easy to dismiss the warnings. Looking back they were there, and I was just not ready to see them. Mothers with kids on the autism spectrum always talk about mother’s intuition and how they just knew. I think it comes from the bond between a mother and child.

And you can feel it in the way they hug you. Tommy was reluctant to hug, and when he did it seemed as though it was without feeling and for mere seconds. While Mikey would throw his arms around every person who crossed our doorstep, Tommy would back away from friends and family.

The lack of hugs is the one thing that always pressed on my heart. That is one of the parts that is so difficult for parents… you are just looking for that huge hug and the "I love you moment,"... and as you feel them pull away from you as you hold them closer, a piece of your heart is pulled away, too.

A hug with your child with autism is like standing at a crossroads with a door between you. When you learn your child has autism you wonder... how do I unlock that door?

Before the doctors told you, did you already know somewhere in your heart? What was your catalyst moment that made your heart realize what was going on? What was your deepest fear at that moment?

Kelly Austing
June 29, 2008

Note: This Perspectives Blog post is written by a Guest Blogger of DrGreene.com and is provided in order to offer a variety of thoughtful points of view. The opinions expressed on this Perspectives Blog post do not reflect the opinions of Dr. Greene or DrGreene.com. As such, Dr. Greene and DrGreene.com are not responsible for the accuracy of the information supplied. This post is used under Creative Commons License CC BY-ND 3.0.

Comments

Submitted by Anonymous on Tue, 2010-07-27 17:30.

thank you for sharing

I am an adoptive mother of a sweet little girl who will be 2 on Thursday. I recently was advised by a new pediatrician (we just relocated) to have an evaluation done for ASD. The tears rolled down my face. I had an inkling. I knew things weren't "normal." I have a brother with autism and have worked with people with special needs. In some ways, I feel validated in how truly difficult things have been over the past two years... so many people have been judgmental toward me: "You need to do this or that... this is your first child, you don't know what you are doing" type of comments... My heart is broken as I face the initial realizations and challenges, especially since my husband is without work and we have other life challenges to face right now. But your article does help me to feel less alone as I begin the journey down this new road. And I truly appreciated the other commenter who added, "Love never fails." Thank you to Dr. Greene and all of these parents who take the time to share.

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Tiffinia Sissac

I read your article about

I read your article about your twin son Tommy and all I could do is drop my jaw and say thats how Tamia act. Tamia is my 3yr. old daughter and she has just been diagnosed with autism on the 19th of February. I've been noticed changes in her every since she was about a year and a half, but she would also play in her feces and at times i'd catch her eating her feces and it would hurt my heart because when i'd tell her "no that not good" she wouldn't understand a word I was saying. I immediately sought out for help from our peditrician, they put her in early intevention which consisted of Developmental, Occupational and Speech therapy. It wasn't working for her to me because everytime her therapist would come she would act out in tantrums and wouldn't want anyone to touch her. I started to do research on my child myself because I knew it had to be something else. I have a 5yr. old daughter and Tamia is the total opposite of her when she was that age. I got some imformation from a lady who worked with kids with Autism and she said Tamia had most of the symptoms and thats when my researching began. The doctors to me really didn't care theygot you in and out and really didn't listen to me and that hurted me because like you said Kelly,when you hug your child and they don't hug you back tears into your heart. I along with her dad and sister all taught her howto say "Love You" and she says it and understands it. Now I'm currently trying to find schooling for her because she needs things to do because she gets into everything at home when me and her dads asleep because we work nights and her sister is at school. She still can't tell me whats wrong with her and can barely speak, but she can mimmick what she hears us say which is a good step. We just have to work with Tamia and Tommy at home as far as learning to speak and everything else and also get them the professional help. From reading your article it sounds like Tommy has ASD Disorder but it is mild like Tamia so with the right help at home and profesionally they can grow to live normal lives. I am a 24 yr. old mother with the help of a loving man and two beautiful daughters and we all wish you and your family nothing but the best and we will keep you all in our prayers. God bless you Kelly, I totally understand you and it makes me feel a little better that there's someone out there who are willing to talk about there situation publically. I commend you and have nothing but the upmost repect for you, you really made my day, thank you Kelly.

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Kay

I have been searching the web

I have been searching the web for where to turn next for my son. Since pre-school, I have had him evaluated through the school district for possible ADHD. He has always been an active boy, very loud, and lack awarness of people's personal space. In the early years, I was told by the "professionals" that he's a boy, give him some time. As of last year, 3rd grade, they said he may have mild ADHD, but the testing was not conclusive. When I discuss this with the school psychologist, she tells me that he is far too bright to receive any help through the school district because he does not have a learning disability. The pediatric neurologist has suggested Ritalin but I am concerned with the long term side effects I am still not convinced that ADHD is the correct diagnosis, however I am very concerned with the effect his behavior is starting to have on his social life and in the classroom. He tends to call out alot, doesn't participate in the games on the playground, and has few friends. I will continue to have him evaluated until he gets the help he needs. This website has allowed me to see that I am not alone if this struggle.

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Peggy

Almost from his birth it was

Almost from his birth it was apparent to me that my son had unusual responses and reactions. I had worked professionally with babies and young children so I was experienced in child development. I was shocked when other professionals seemed not to know what I was talking about, and attributed his social developmental delays to 'the way you are with him'. After a lot of intimidation from professionals, saying that I should 'pull my socks up or else'(my son was falling more behind in social behaviour) I claimed my right to a second opinion. My son was then diagnosed with atypical autism when he was 5. An article I had read years before on autism, entitled "I am not yet born" has been my mainstay. In essence it appealed to the mother to be patient and wait. The autistic child is physically like other children, but emotionally and socially he is premature. Don't be impatient. Continue to relate to him individually as you do to a baby,until he is ready to receive it. Go at his pace. Respond to his needs, especially when he starts to attach to you long after other children have gone through that stage. Have confidence that sometimes you as parents know better than professionals. Our son could not cope with primary school so from when he was 8 we home educated him (against professional advice) until he was 11, then we introduced him gradually into a main stream secondary school which showed particular understanding for his condition. Now at the age of 14 he is in the upper sets, expecting to achieve good GCSE grades in 7 subjects, plus a diploma in ECT, equivilent to another 4 GCSEs. He is well liked by all staff and he has a few friends.He talks to me about his condition, and sees both the advantages and disadvantages to being autistic. His difficulty and lack of confidence in social relationships and personal care remain, but I expect, given the right setting for him, he will be able to hold down a good job, and be valued for his capabilities. The two phrases that have been my mainstay are:- "I am not yet born." "Love never fails."

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Robert

I would agree, “that a mother

I would agree, “that a mother knows something is wrong”, because my wife has exactly the same story, indeed, ‘she knew’ something was not right before our son was 6 months old! (he is mildly autistic and now 28).

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norma wilson

i am pleased to hear that

i am pleased to hear that things are getting better with diagnosing children with aspergers syndrome as it took me 14years to get my son diagnosed he is now 19 he is quite a handful but now i know what to expect we get on well with an understanding that is just between us his signs of affection are to insult me in a funny way which tells me he loves me which took along time to understand but i am still waiting on my hugs from my lovely boy

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Diane Ashton

I have just come across Kelly

I have just come across Kelly Austing's article 'Before Diagnosis' I cried as I read it. My twin boys are now 10 years old. Last year at age 9 one of my boys was diagnosed on the autistic spectrum with Asperger's Syndrome and Dyspraxia. I can identify so much with Kelly's feelings, as by the age of 1, I knew something was different with Joseph, the unfeeling hugs, not holding my hand and lack of eye contact were a dead give away. More things became obvious as he grew. Friends, family and later school teachers would tell me everything is fine, I worry too much, BUT I knew otherwise. We are slowly getting help, but it is a fight all the way, my heart goes out to him everyday as I see the struggle and upset that he has to deal with in his daily life to survive. A mother always knows, we are blessed with an intuition to know our children better than anyone. Thank you Kelly for writing your thoughts that helps us mothers to realize that we are not crazy, or making things up we really do know our children.

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Kelly Austing

We meet people in our lives

We meet people in our lives for reasons I always say and you were one of those people, along with your beautiful wife and child, who I knew were special from the start. Your work is one thing because you help so many children every day with the important message of health for this new generation....but you are a great friend and have been a huge support through the years. I continue to sing your praises and those of Healthy Child Healthy World because you are truly making a difference. Thank you for all that you do!

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Christopher Gavigan

Kelly, Your story is an

Kelly, Your story is an empowering tale for every parent searching for answers. You have been the strongest advocate for Tommy at every turn - as you seek the best information and the best solutions that work for your family. It's true - everyday is an opportunity to learn more and a hopeful chance to move forward I commend your spirit, your passionate investigation, and for remaining positive, focused and happy for your children. You are an incredible mom!!! And I must say, I am so happy to know you as a friend - I truly thank you being a strong inspiration everyday for my work here at Healthy Child. Christopher Gavigan CEO - Healthy Child Healthy World www.healthychild.org/book

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DrGreene

Kelly, thank you for sharing

Kelly, thank you for sharing this powerful description of your dawning realization, from the moment you suspected to the moment your heart knew. You exemplify an important truth: a mother's bond and a mother's intuition are never to be ignored. Whether it's something as minor as an ear infection or as life altering as autism, a mother is often the first to know. Not that every concern or fear comes true -- but that a mother's intuition is a reliable guide to what should be considered, investigated, or pursued. My heart is deeply moved reading your desire to unlock the door to Tommy, and I'm very much looking forward to reading the rest of your story. Thank you, thank you, thank you.

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