Autism Awareness makes me sad

2 Apr

There. I’ve said it out loud.

I spent all last week watching people ramp up for “April is Autism Awareness Month!” and I felt myself inwardly cringing.  I could feel myself getting twitchy and annoyed.  I started to write about it, only to delete everything in fear that people would call me a horrible bitch – because that’s how the internet works sometimes.

Today though, I posted something about orphan diseases on my personal Facebook page, and I realized why Autism Awareness gets to me so the way it does – It reminds me how much we have been alone in all this. How so many people are alone in their own journeys. How many things people are blissfully unaware of while they “light it up blue” or wear red, or whatever the latest campaign is for autism.

Were you aware that last month was Hemophilia Awareness Month? Probably  not.

The thing that has always gotten to me was that like so many people with children with autism, we started life with Maura thinking she was fine, and then signs started popping up during her toddlerhood.  We too went for an autism evaluation at age two – and got a cheery “Well, she’s definitely not autistic!” response and sent on our way, still clueless as to what was going on with our child.  By age three, we had exhausted all the tests and were told to come back in two years unless something else changed.

“Yes, but do you think she has something?” Josh asked the neurologist as Maura played with toys on the floor.

“Oh, she definitely has something!” the neurologist stated matter-of-factly.  He was the first to say such a thing, and it was a relief to hear, because up to that point, we were still being told that she *mighty* outgrow her “delays” while other people found creative ways of telling us that maybe we were making a mountain out of a molehill, that Maura wasn’t that delayed, that we shouldn’t complain to mothers going through “real” issues with their children.

Yet that wasn’t the moment that stuck with me.  Most people talk about the devastating moment when it’s confirmed that there is something wrong with their child.  We weren’t even given that moment because the doctor’s next words hit us harder.

“But you may never know what that something is.” he continued.  “She’s too healthy and has no regression.  Medical research just isn’t interested in kids like her. There’s no money in it.”

It wasn’t until years after that day that I stumbled upon the term “orphan disease” –

Orphan Disease

a disease which affects a relatively small number of individuals and for which no drug therapy has been developed because the small market would make the research and the drug unprofitable


Orphans.  That really does describe what we went through in the early years.  We were on our own in so many ways.  I tried getting Maura on a state aid program when she was three, to help pay for all our doctor appointments and therapies that she could use, only to be told to we needed a “qualifying diagnosis” – and “Something” wasn’t one of them.  I looked up therapies that might have worked for her, but part of the qualifications to get into the therapy was an autism diagnosis.  I had another mom tell me to my face that we had it “lucky” because Maura didn’t have autism, and another ask me if I was “afraid” of the autism diagnosis.

That one made me laugh.  Afraid of autism?  They had no clue how many other syndromes and conditions I had looked up, in order to discover what Maura had, ones that were a lot scarier.  I would have gladly taken an autism diagnosis – it would have opened so many doors for us!

And then, because this is just how my life works, when Maura was about four, we found ourselves in a small office at the elementary school talking to the school psychologist, who very delicately informed me that one of my other children had Asperger’s.

My response was a shrug and “Okay.”

He blinked, then blinked again.  I guess my lack of devastation, wailing, and gnashing of teeth threw him off.  “Well….um…how do you feel about it?”

I pointed to Maura.  “See her?  We’ve spent three years trying to figure out what’s wrong with her and have gotten no answers.  So anything that comes with a label and books and support groups, I’m okay with.  Asperger’s isn’t scary to me.”

It wasn’t.  There are wonderfully smart and quirky people on both sides of our family.  Our Aspie?  Totally blends in with the rest of us.  The diagnosis didn’t change how we viewed him, just helped the school understand him better.

And yet, the fact that I now had a child “on the spectrum” suddenly gained me street cred.  “Ohhhhhhh….you’re one of US!”  Well gee whiz, I thought I always was, thanks to Maura. We’ve sat in the same school meetings, shared therapists in Early Intervention, dealt with so many similar issues.

But some couldn’t see how much we had in common despite the different labels.  They were so busy making sure their child with autism was accepted, that we were aware, that they didn’t realize how they shunned Maura and me.

It was frustrating, annoying, and sad.  Because we could have learned so much from each other, supported each other more.  Yet being an orphan meant I had to learn about all the other orphan diseases and rare syndromes.  I am more aware about these things than I was eleven years ago, thanks to Maura.  Because we’ve been orphaned, I’ve learned to accept everyone, whether or not there’s a label or cause or color scheme.  I can keep another orphaned family from feeling alone, because I know what it’s like to feel alone, and remember how grateful I was to those who did reach out to us and supported us.

And that’s how I should leave it, right?  I can hear people saying “Let it go” and “Move on, stop living in the past”.  But it’s not the past.  We’re still orphans, sitting on the sidelines.  I remember watching our state push for mandatory insurance coverage of autism therapies – aka speech therapy, physical therapy, occupational therapy.  All therapies Maura has had (and are still getting).  Therapies I’ve had to pay out of pocket for sometimes.  But we wouldn’t have qualified for this insurance coverage because Maura isn’t autistic, and it only benefited those with autism.

Once again, we were left out in the cold.

And every April, someone else learns about autism, and decides to diagnose Maura for us, and rejecting the idea that maybe, just maybe, in ten years of testing, we would have noticed this.  They discount not only our opinion, but the opinion of Maura’s teachers and therapists, people intimately involved with both our child and children with autism.  “Do you really trust them?”  they’ll say.  More than you, complete stranger who’s never actually met my daughter.  Please don’t imply that we haven’t tried hard enough, or you will get our list of tests and specialists.

Meanwhile, I watch people donate to fund autism research as I sit with the knowledge that no one seems to care anymore about what my daughter has.  We saw a new neurologist a few months ago, and I had questions about certain syndromes, if it was possible that was the root of Maura’s issues, and got a lecture about “accepting” my daughter for who she is, and a label wouldn’t change anything, basically, stop trying.

Yes, we’ve even been orphaned by many in the medical community at this point. And that is something we had to accept years ago.

I’m not saying don’t be aware of autism.  Some of the most awesome people in our journey have loved ones with an autism spectrum disorder, or are on it themselves.  All I am asking, is that while becoming aware of autism, be aware of all the other less media-savvy syndromes and disorders out there.  Read up on hemophilia. Learn about ichthyosis, or Cri du Chat, or Bilateral Perisylvian Polymicrogyria or Ehlers-Danlos syndrome, or 9p Deletion Syndrome   – and yes, learn about all the types of autism as well. Learn that there are people everywhere dealing with these sorts of challenges every day, awesome people who are deserving of your acceptance, no matter which month it is.









13 Responses to “Autism Awareness makes me sad”

  1. Johanna April 2, 2015 at 1:36 pm #

    What a great post! I have two boys that are mildly Autistic.
    It makes me sad that you haven’t been able to get answers for your Maura.
    It’s terrible getting the runaround. As a parent we leave no stones unturned when searching for answers/support for our little ones. It seems you have been doing that all along on your own. I hope one day soon you find someone who can tell you definitively what is going on with your daughter.
    As for the other disorders you mentioned I personally have never heard of them and will be looking into them shortly. Thank you for mentioning them. Wishing you and your family only the best.

  2. Chris April 2, 2015 at 1:43 pm #

    …as always, Applause, applause, applause!

    Sent from my iPad


  3. Donna April 2, 2015 at 2:04 pm #

    Can’t agree more! Our daughter was diagnosed by the HSE (gov’t health agency) as having autism. Then a year later the very same people said she didn’t have it. All of the professionals, the other ones, were astounded…she either has it or she doesn’t. We were too. Then, we had her privately assessed. Thankfully, she came up on the spectrum. I say thankfully, because without that diagnosis she would not be able to avail of all the treatments and therapies she so desperately needs. Is she on the spectrum? Who knows. But, me and her father don’t think so. But, with that diagnosis, she is much better today with all the help she received (and still receives) due to that little piece of paper that says she’s on the autistic spectrum. Without that piece of paper….I shudder to think of what her life and ours would be like today. Thanks so much for posting this…I, too cringe when it is Autism Awareness Month. Our daughter is nearly nine and has seen the same neurologist her whole life due to “seizure activity”. After what feels like a gazillion tests…still no diagnosis. It’s frustrating…never mind worrying. ;(

  4. Denise April 2, 2015 at 2:11 pm #

    I understand your feelings about not having a label, for years my daughter was unlabeled, she showed autistic behaviors but the evaluators would say she wasn’t. I accept that she is cognitively delayed, but there aren’t resources for just that. I fought long and hard to get her a label and it was worth it because once she had a label services and therapies opened up. I’ve been following youth blog for several years and I admire your gumption for writing what most of us feel. Keep fighting for a label, it isn’t futile. In the meantime know that you are a great writer and a truly special mom.

  5. teresamcnally April 2, 2015 at 2:33 pm #

    Well said Phoebe. What we have are a school of individuals all with individual needs ! While there is some comraderie in being part of a support group . dS , ASD etc…. there needs to be a global support group for all living with a particular need/ disability. It is my belief that government etcetera get off the hook because our students and their families represent a small minority with a low voice ! I have recommended ‘herding cats’ to many parents and professionals working in this area…. Not to mention my own family snd friends. I’m old enough to have lived through ‘ the gender’ issue in education. Mammy had to come out of the kitchen in text books in the eighties. Then in the nineties cultural diversity was god buzz word.. Some black Irish or Asian Irish or even Irish Travellers had to be represented in text books/ presentations… tokenism is never the answer . Change of mindset , openness and transparency are vital ., Your blog challenges societal representation of disability in a real , clear sometimes humorous way … Keep faith . Keep writing … You are the Voice of Maura .. And her peers . And I for one respect your accuracy and honesty. 🙉🙈🙊


  6. Lori-Anne April 2, 2015 at 3:05 pm #

    Well written, Phoebe! Thanks for your words! My 6yr old son is “falling through the cracks” right now (words by his teacher as well as his pediatrician) because he is delayed, but not “delayed enough” since he is not regressing. He has been consistently 1.5-2 yrs behind and no tests show any abnormalities. It’s frustrating! I’m glad that he is doing “well enough”, but also see how far behind he is and how much further he will be if he does not get some sort of label put on him. (he needs some sort of aid in class just to keep up with his peers, but he doesn’t get one without this name.) I wish he had autism; it would be simpler; we would have something to work with then.
    Thanks for pointing out other disorders and diseases and delayments. There are so many beautiful children (and adults) who deal with ongoing health issues that we have no idea about!

  7. lisa April 2, 2015 at 4:05 pm #

    I get it too. My son now has a label in the school system as cognitively impaired. I think autism just sounds better. In reality you could have both. My son also has apraxia which in my opinion is almost worst because when he even attempts to use his language he can hardly be understood. In Michigan, the only thing you really get with autism diagnosis is ABA therapy and I dint feel it was right for Nolan. I think yes it would help get him understanding more and possibly help with his speech and cognition but at the cost of one on one therapy for 6 hours. I want him to be kid. Its a choice and if is wrong so be it because no therapist would give him that diagnosis anyway unless I really wanted to do ABA. So he does speech and ot and has done pt and he has been in preschool 4 days a week for 3 hours and next year he will be in all day kindergarten in ci class and i liked it. Its seemed really nice. Its heart breaking sometimes. We didn’t do any genetic testing because i didn’t feel it would change anything, but had we maybe we would get more answers but I am not sure we would get more therapies. I think Nolan is a Maura and there are a lot of kids like them, a lot of people in general. Are you shunned by the downsydrome moms? because i am sometimes but not always.

  8. Jane April 2, 2015 at 5:35 pm #

    Great post! I’m so sorry at the way you’ve been treated all these years!
    My children and I all have EDS which few in the community know about. Even the GPs don’t seem to understand because it’s just not in the media. I wasn’t even diagnosed until one of my children happened to be diagnosed by a GP when he was 14! All the years of odd symptoms, pain and deterioration made sense then. By that stage I had three children. Fortunately we do not have it severely. We can still do many things.
    Labels seem to be so very important in this world, especially when it comes to getting financial support for medical care. If they can’t slot you into a particular diagnosis you miss out on so much support.
    My daughter and I also have porphyria, something which again was diagnosed only a few years ago! The GPs don’t seem to understand that there are many types and we can’t even find a specialist in our state who knows much about it. It is frustrating. It’s not a “popular” condition!
    I can’t imagine how exhausted you must feel emotionally and physically all these years trying to get help. You’ve been put in the rare and too hard basket by medical people. And how annoying it must be to have people you know regularly tell you that they think your daughter has autism, as though it’s not something you haven’t considered and had tested for over the years. All I can say is that I am so sorry that you’ve had to deal with this. I hope one day you can get some answers that help you, and that you can get the financial and emotional help you need to support your family.

  9. Flamingo Dancer April 2, 2015 at 6:25 pm #

    As a teacher I have come to realise just how broad the Autistic “Spectrum” really is. This term I had two boys in my class who needed so much individual attention that in the end I felt like an utter failure. 26 children in the class and no support, I tried to assist the boys, one of whom was obviously very intelligent but just could not cope with the structure of a class in computer languages. There is only so much diversification I can do in a main stream class, day after day. The other student had poor social skills as well, so his fellow students did not make his position easier. I like awareness days because it reminds the “average” person that life is not always fair, and that maybe we should be grateful that the most we have to worry about is whether our kid gets an A or a B+.

  10. Plem April 3, 2015 at 10:11 am #

    Your point a view is appreciated. Please don’t get me wrong. As a advocate for Children with Autism I feel I do need state something…..Autism treatment is specifically ABA therapy (Applied Behavior Analysis) not therapies such speech therapy, physical therapy and/or occupational therapy which are typically covered under insurance. The mandates in place for this life changing therapy is only covered under Fully Insured policies purchased in a state with an Autism mandate.

    • phoebz4 April 3, 2015 at 3:21 pm #

      It depends on the state though. In Michigan, it covered OT and ST as well as ABA. Also, Maura did a version of ABA called Applied Verbal Behavior, which helped her learn that she could talk. It was billed as speech therapy. It cost $12,000 for a three month stint.

  11. Suzanne April 5, 2015 at 8:18 am #

    I’ve had the thought quite a few times than in a way, we are lucky Janey is clearly autistic. It’s something you can say to even strangers and they’ve heard of it, there are classes in our district strictly set aside for kids with autism, all that. Yes, it’s a wide spectrum, but if you don’t fall within it, as Maura doesn’t, I can imagine how lonely that would feel. You made me think even more about this issue. Thanks for your great blog.

  12. Katrina Davies Hutchesson April 5, 2015 at 5:06 pm #

    Oh good…it’s not just me who gets frustrated for my friends with things like this…to come under an umbrella (be it a condition, a disease, a cancer or whatever) of a common term that everyone gets and understands and there are organisations for and fundraisers etc helps to make it easy…but when you do fall through the cracks and there is no one there to celebrate, and help and supply info…that is so hard and not fair.
    My husband has had minor issues since he had a heart attack several years ago…he has seen neurologists, and all sorts of specialists…and they just say well its not this…and list off all the common conditions…which is good to know as some of them are quite scary in the way the progress…but they can’t give a name to what it is…he is fine and just goes along with it (well he has no choice really) but it worries me, I want the security of knowledge that comes with giving it a name and sticking a label on it…

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