Wednesday, March 2, 2011

What Defines Me (A Discussion About Labels)

In sociology, people are defined by 'statuses'. Statuses can be achieved or ascribed. Achieved statuses are a result of the person's own choices while ascribed statuses are involuntary.

My achieved statuses would include:

  • Photographer
  • Father
  • Husband
  • Guy who likes Reggae music
My ascribed statuses include:

  • Man
  • Caucasian
  • Son
  • Brother
  • Guy with a red beard
  • Father of a Child with Autism
Everyone has a 'Master Status' which they choose, either consciously or not. Their master status can be either ascribed or achieved, it's simply the single status that they feel defines them the most for whatever reason and it defines how they present themselves to others.

Whether we like it or not, my son holds the ascribed status of Autistic. I'm sure that we can agree, that status should not be his master status, defining him and consequently limiting what he can expect to achieve in his life. Since we all agree, that's why this post isn't about that. This post is about MY master status.

I spent about eight months last year, leading up to Joseph's diagnosis, mostly quietly, reading articles, watching videos and learning about autism. Once we got his diagnosis in August, it grew to consume a large part of my life. "Father of a child with Autism" became my master status, an ascribed one, probably because it's the one that I felt (and still often feel) least suited to handle, it's certainly the one that challenges me the most. Maybe because it lets me know that I'm not just a dad who has a hard time "handling" his kid.

So I don't want my son's master status to be "Autistic" and I don't want my daughter's master status to be "Sister of Autistic Guy," so can "Father of a child with Autism" be my own master status? Does that, by extension, make his master status in my eyes "Autistic"? Is there something wrong with that? For my sake, for my son's?


  1. Reggae music, eh? Looking for some new guys. I like the classic Bob, Tosh stuff, but have you ever listened to Mishka or the Stephen Marley acoustic stuff?

    It's also very hard to get rid of the "autistic Andrew" phase for me. HE's still the same knuckleheaded kid he was before diagnosis, but I look at him differently. I think his master status would be Stubborn Knucklehead. Not autistic alone.

  2. Brian, thanks for commenting. Have you heard Toots and the Maytals? They're one of my favorite old school reggae groups. Not really into the Marley kids, except Damien (his Halfway Tree album, specifically) which is more hip-hop and dancehall than roots reggae.

    Is or has your master status ever been "father of a child with autism"?

  3. I like Toots, they have a kinda motown feel to some of their stuff that I enjoy. I'm not really into the Marleys either, except the Stephen Marley acoustic stuff.

    I guess my master status would be "Father and husband" with a secondary one father of a child with autism. But there's also father of a daughter, EC teacher (ironic, isn't it), but yeah. Autism pretty much defines how htings go at my house.

  4. In the long run your master status changes and being the "Father of a child with autism" is how you feel right now. It is making it easier for you to cope with what is going on in your life and help others by sharing posts like this. Just because it says "Master Status" it doesn't have to stay the same forever. In fact my "Master Status" changes throughout the day depending on who I am with and what I am doing. Regardless you make of your life what you want to and I know for a fact that your an amazing parent, husband and friend to everyone. If I got to choose your master status it would have to be, Person that is-"Practically Perfect In Every Way"! Your son's master status would be,"Adorably and Amazing child Everyday" and your daughter would be "Strong beautiful and Stubborn child every minute of everyday" Now your wife on the other had (since that is me) will have to remain a secret unless you know me and choose one for me, but right now I am "loving mother and wife"

    To all who read this blog entry remember your life and your child/children's life/lives are what you and they make of it and no challenge or obstacle no matter how big should not make you who you are or make you fell less of yourself or question yourself but help you realize how strong you really are for being able to handle it!

  5. I don't every post comments on blogs so I hope that I read your post and understood what you were trying to say. I hope what I said makes sense even though small children were attacking me while I was writing it.

  6. Hi Joe! It's so nice to see a Father who really cares about their child who has special needs and recognizes it :) There are alot of people not just father's but Mother's as well who ignore the issue or fail to realize their child has a disorder of some type. Autism is not the master title...Caring Father is the master title u chose to be :) I have 2 autistic children, one who is very smart (11 years old), social skills are there just does not act his age so to speak and another child 10 years old who cannot speak for himself, he can repeat what you say but cannot communicate to us for anything, when he is in pain, sick, tired, hungry or anything so I know how you feel but to see a Father just post out like this is brilliant!!!!! Bravo to you :)

  7. Hi, Joe. I would say that what ever your master status is, you should wear it with pride. As social awareness and understanding increases, "Parent of an Autistic Child" is quickly becoming a badge of honor and respect.

  8. Before my son was diagnosed with Autism I read a post by an adult with ASD and she wrote something that really stayed with read to the effect of, "I have is a part of who I am, but it does not define me, therefore I prefer not to be labeled as Autistic." When my son was diagnosed about a year later, I decided that rather than referring to him as "Autistic", I indicate that he "has Autism". He is a boy, he is going to be a second-grader, he is a brother, a son, a grandson, a nephew...on any given day he is also a Jedi, a wizard or a super hero (sometimes a combination of all three).

    I have three children, my youngest has Autism...but it does not define him - it is part of what makes him who he is...but when I list his attributes, positive and negative, in his case, I do not start with the Autism. At times, the behaviors that are driving by the Autism guide everything for all members of our family, but not always. When that happens, he is the brother and son with Autism...but most of the time, he's just the little brother.

    We all find our way...most of us quite slowly. To complicate matters even more, just when we think we are starting to "get it", things change and we have to learn new parenting stuff...they all keep us on our toes - our children with Autism just seem to get us on the days our socks don't match to boot. ;)

  9. I have a 16 year boy with autism. Do i treat him differently then my 2 other kids, boy age 17 and daughter age 20 who is dealing with 4th stage Cancer? yes i seem to baby my son whos name is austin more then my others because he is differnt, he is very smart, and just amazes me with some of the things that he comes up with. hes my lil water man, he will take a bath 40 times a day if i let him. loves flags and will put 40 holes threw-out my yard to hang his flag, my biggest thing that i find so very interesting is every time he decides to take out his flag and put it in a different spot he will stop put his hand on his heart and say the pledge of alligence . so i guess my point is u can have what u want on your main status and yes in time u will not only add a different status but look at all the unique things about your son which will add sunshine in your life and a smile upon your face.

  10. I am not one who posts on these blogs, but I have to say as a mom of an Autistic 10 year old and an 8 year old with his own special needs it is refreshing to see a man stand up and learn about Autism, I do not find that you are wrong for your status, this is your life it is challenging and people in general do not understand Autism.You are a rare breed. Keep learning and being there for you children.

  11. What if I don't have to look you in the eye... then I wouldn't have to see the label stuck on your forehead... and I could see the words clearly coming from your mouth, could you move to the left. The shadows of reality are distracting... never mind. I'll just focus on the light switch behind you and we'll just get through this dialog. ~an autistic child talking to the Master Status in US~

  12. I stumbled across this post on FB and found it very touching, I just moved out of Columbus, Ohio to achieve peace and serenity on the beaches of MD/DE. I have struggled my whole life with my diagnosis and although it is not autism, I share a lot of those traits and find myself drawn to others with autism or aspergers. Your son is an angel to me and you are a model father. I will not even be talking to my own father this father's day but to you Joe Harris - HAPPY FATHER's DAY!!!!! <3

    Your friend from afar - Megan
    "Every little thing is gonna be alright" - Bob Marley

  13. Hello :) I am the mother of a 7 year old Autistic daughter and a step mom to a 4 year old Autistic boy. :) They are beautiful children! Who of course tend to drive me crazy at times! :) Summer vacation is definitely one of those times! :) My daughter is also severely ADHD, has an impulsive disorder, sleep disorder and speech issues. Although she is 7, she functions on a 3/4 yr old level. A true sweetie, but a handful none the less!

  14. When we got our daughter's diagnosis last year I felt the same way. I am now the Mom with the autistic child. After running around dong all I could for my daughter I spent the rest of my energy trying to be the same ol fun loving Sue. It was exhausting. But, I've come to realize all parents have labels. The germ phobic mom. The mom with the bratty kid. Unfortunately, ours is for life. But, my daughter is amazing , as I'm sure your son is. There are worse labels in the world to have. You son's life is a blank page. The labels will vary with time. Believe in him and yourself. Maybe he'll be the first Autistic person to have his own reggae band. Stranger things have happened.

  15. Your master status is not Father of Child with Autism, it's just Father. Not everyone can be the Father you are. You are a special father of a very special child who provides you with unique challenges and unique triumphs that not every Father can claim. Our children do not define us with their "labels", just as their "labels" do not define them. You are a Dad and your son is a child, you love him no matter what his "label", as he loves you regardless of his "label". I also have a son who is autistic. He is the same boy he was before his diagnosis, my view of him has never changed. It's now that I know his diagnosis, I can begin to understand his view. I too have a daughter who is the sister to the autistic boy. It is true she is Matt's sister but she is known for her caring, loving and sparkling personality. I do agree with you wife as far as how your status changes depending upon how you are feeling. Best of luck and from what I have read you guys are doing a great job! Thanks for sharing your story, it's always comforting to know there are others out there wondering the same things! : )

  16. Autism is all-consuming, especially in the beginning, but I like how say you don't want your daughter's 'master status' as 'sister of autistic guy.' It puts it into perspective of why it might not be OK for you either. It does get better as time goes on, and your status will change. 'Good wife and mother' is my aspired 'master' status, but ascribed is also 'mother of a wonderful boy who happens to have autism.
    Have you read the blog It is written by a friend of mine that (obviously) is written by another dad.
    Blessings on your journey!

  17. Hi Joe. Im a mother of 5 children. At 8months old I noticed delays in our son who is now 3 1/2. He was officially diagnosed at 1 1/2 years old and even though I KNEW, it was still a hard pill to swallow, especially for my husband. I think moms take things like this differently. We have gotten to a point where we accept Devin as he is but still hold hope for a positive change rather than obsessing over what could have been if he didn't have autism. I wish you & you family the best of luck. If you are accepting of it, the autism community can be very helpful & comforting in the experiences you encounter.

  18. My master status is now a father of a young man with autism ,as our children grow older our views and visions change .My son is now 19 and its much different now than it was 10 years ago for us .We as parents put emphasis on much different things and take that rollercoaster ride through adolesense which is quite a journey into adulthood .My son and his disability AND ABILITIES have and are the priorities in mine and his life ,dispite it all we persivere and thrive .So I have no problem as father of autistic young man as my master status :)

  19. I too have struggled w/my 'Master Status'. Justin (our son) was diagnosed at age 7 through a long & emotionally difficult process. He is now 18, graduated from High School & is attending Community College while still at home. My master status changed quite a bit over the years from things like - 'Over Protective Mom' (when we knew something was wrong but didn't know what) to 'Crazy Lady' who was willing to try any & all types of therapy (many of which are now standard practice w/autistic kids & adults) whether sanctioned by the school, Dr, or loving grandparents. It then changed to 'Autistic Resource Mom'. Our Justin had been only the 2nd child in our county that was diagnosed w/Asperger/Autism at the time we figured all this out. It eventually changed to 'Home-school mom of an autistic son'.
    Justin was just told of his 'diagnosis' at the age of 16. We chose to keep the 'umbrella' term of Apserger's to ourselves and within the community of professionals/volunteers that worked with us. We never kept the fact that he struggled from him. He was far too smart for that and worked too hard to succeed at whatever 'issue' we were working on. We freely spoke about what his particular struggles were and attacked them head on... We just never gave him the 'Autistic/Asperger label because we didn't want HIM to see it as a limitation.
    Justin is now aware of the 'label' and has cautiously accepted it as his own. But it doesn't define him. He tells me that 'I'm just the way I am, I know no different, it doesn't matter.'
    At this point I am unsure of my 'Master Title'. Could it be 'Mom with an autistic Young Adult'? I'd like it to be just 'Mom', but that probably isn't going to be the case to the rest of the world.
    What really matters is what I am to Justin & he assures me that 'Mom' does just fine :)

  20. No matter what name you choose you already sound like a wonderful father
    Joseph is blessed to have you all for his family.

  21. My daughter is so many things, her master status is wildlife biologist. She is now achieving a new status of illustrator.

    My master status is jewelry designer. One of my most treasured achieved statuses is mom, I guess a sub-status would be mom of a special needs girl.

    We started on that journey at about age 4. It's taken us through so many twists and turns. In the beginning the severity level was at times disturbing. With OT and pragmatic speech therapy we've gotten to a place where you can't even tell. Even if you spent a lot of time with her now at age 13 the quirks would be just that to you, nothing more than personality quirks.

    The status of autism may change and evolve. All of these neurological wirings may eventually fuse better. I was told the brain is a muscle and can develop with exercise. That's what the therapies like OT and Pragmatic speech therapy do. It takes consistency and dedication.

    Hopefully you will acquire the new status of "advocate" for your child. Arm yourself with knowledge, you sound like the kind of person that will navigate though this maze very effectively.

  22. Honestly, "Dad" and "Dad of kiddo with Autism" are one in the same...the second just being more specific. I am a mom to a son with autism, but I also have 2 kids without ASD too. I am not discounting them when I mention autism, nor do I highlight my son's diagnosis as defining him. It just is what it is.

  23. Just got this link today (June 14). Hope things are going well. I work with children who have autism. They are my favorite students. They certainly are the most memorable!

  24. Hi.
    I read your blog and had to comment, although it's not something I would normally do. However, I don't think there's anything wrong with your master status being the father of an autistic child, nor with your view of his as autistic.In fact, I view that as a positive thing. Afterall isn't the master status or role we see of ourselves the very things that at that time are most profoundly important to us?!At this time in my life mine would be "mother of an autistic son". The reason for that is because it is who I am, it is my most important role and it takes up much of my life and heart from the tiniest to largest parts of every day. And shouldn't I see my son's master status as autistic when it controls every part of his life? I mean his autism effects every aspect of his life in both positive and negative ways and cannot be ignored or disregarded.Seeing him as only autistic is a problem, but no parent sees their child as simply a label.The problem is that an uninformed society sometimes does.

  25. My son didn't even know he had autism. I didn't use the word. When he was 15 and recovered, I started telling him more. He almost 'forgets' that I used the word Autistic after I tell him. He refers to it more that he had 'ADHD' and still has some symptoms of 'ADHD' but it's no big deal... Someone told me to always treat him as if he were recovered... well it worked for me! He's not only 'quote normal' now, but in some ways more mature than his peers. In other ways, still more immature... it was quite the trip! Fasten your seat belt!

  26. Hi Joe,
    I'm a mom of 5 kids with autism. "Mother of children with autism" is,of course, my master status. It's what my life is about right now, constant uphill battles. It's doing the best I can for them, fighting the battles they can't, and knowing that it's my job in life to do so. What parent wouldn't. So, I'm very at peace with that status. To me, it symbolizes that I'm doing a good job being their mom.

  27. Hi mate. I'm a father of an autistic boy as well as two typical kids. I reckon my master label is probably just "Dad". However, I reckon having the label "Father of a child with Autism" is a label to be proud of, and I happily wear that label often too. Daniel is autistic, but he is totally unique and I am proud of him. In many ways his autism does define him; it is what makes him so special so I guess being his dad defines me too. It has made me a better person also. I used to be one of those people who was happy to watch the tough stuff happen to oter people.


  28. "Father of a beautiful child" is your master status - he just happens to have autism. As does my son, no labels needed - teach, learn, enjoy and most of all ,, be the father you have been privileged to be.

  29. I am a little further along in the journey than you, with a 6.5 year old son who was diagnosed at let me share with you where I'm at. The worrying about all kinds of stuff will never go away completely. It will change dramatically for the better over time as both your son and your whole family makes progress. It doesn't have to define any of you, unless you let it. It is a part of you all that you cannot change, but don't get caught up at all in letting it shape you. Being a dad to a special kid is SO different than I would have ever thought, but I get so much more out of accomplishments that other parents take for granted. So in some ways, it is a much more rewarding experience than the NT parents.

    BTW, I have a 10 year old typical daughter and they are the best of friends. They read and sing together and play all the time. Of course it's not always harmony between them, but their relationship is the most rewarding thing I have in my very blessed and beautiful life.

    Keep up the blogs and hope all goes well with your fam and boy.

  30. Hi from the Philippines! Thank you so much for sharing your thoughts. My daughter Julianna was diagnosed 5 years ago and I have to say my life has totally changed. And by the way, it's still changing each and every day.

  31. Hello Joe,
    We waited 12 years to finally hear what we already knew. There are so many people that are sucessful in their lives that are Autistic as we say not Disabilities...Abilities. Austisic label will get him the help he needs to be sucessful in his life...That is my biggest fear what will happen when I'm gone will he be ok Jody

  32. my status is teacher to all i dont let the fact that one of my 4 sons is non verble 150lbs 4ft6 and not potty trained change that i have it help that use it to your advantage i've got paticne of a saint now nothing gets me mad you learn to see the bigger picture and the petty stuff just dosn't matter alway be your self its what will make you and your famliy happy and be prepared for fun life is allways interesting with an autistic kid around good luck be happy your wife kids, and YOU are all that matters