We’ve been in the process of applying for Medicaid lately. And by lately I mean since the fall with no decisions forth coming.
When Charlie was first diagnosed at age 4 with Aspergers the social worker at the developmental pediatrician’s office told us we could apply if we wanted but that we would likely get denied because Charlie’s IQ is too high and he has no deficits in daily living skills.
I didn’t think much of it at the time. I took it at face value and figured we were lucky to have a little less paperwork added to our lives. At the time he was still preschool age and we were getting all the school and home services we could handle paid through the school district, Charlie was doing great, and I couldn’t see any reason to push for more.
Then kindergarten happened and all hell broke loose. We had no in home services and no idea what to do. We called the developmental pediatrician’s office and they told us about the autism crisis team. This is a team of professionals, trained specifically in autism, who can come into your home, work out a behavioral intervention plan, offer additional respite, and liaison with the school about issues there.
This sounded perfect and with relief I called them to get them out to our house as soon as possible. They informed me they were only available to children with Medicaid. Could we pay cash, I asked. No.
They referred us to the mental health crisis team. They did come out. We told them about Charlie’s violent behavior, how we feared for our other son’s safety, how we were exhausted from keeping a 24 hour watch on him.
They agreed we qualified for crisis services and then offered to take him for a 72 hour psychiatric hold.
What?!?!?
He’s only 5 I told them. He is not altered or mentally ill. He is autistic and afraid and acting out his fears in the best way he can. He needs help feeling safe again. How can taking him away from us for 3 days with a bunch of strangers possibly help him? That would destroy him for good.
We called them, they said, and that was what they could offer us. Did we want it or not?
No thanks. We’ll figure it out.
After several more, seemingly hopeless weeks like this, we started touring apartments in the area, thinking we could take turns living there with Tommy while someone stayed with Charlie at home. We didn’t know what else to do. But, luckily before we could finalize these plans Charlie began to show improvements and a slow return to his former self.
So, we immediately applied for Medicaid, despite the idea by most professionals assisting us that we had no chance of getting it. Our service coordinator told us we fell into that group in the middle that no one knew how to handle. Mental heath couldn’t service us correctly because his behavioral troubles came from his developmental disability and the Department of Disability couldn’t help us because he was not developmentally delayed enough and his problems were only behavioral.
This is where we live. In this middle ground where high and low functioning labels cause us more harm than good.
I was at a local autism conference recently, waiting in the lobby during a break. The women sitting near me were discussing the programs their kids were in and what therapies were used. They turned to me, politely, and asked about my child.
I told them about him and how well he was doing lately. I told them about his program and how DIR and Michelle Garcia Winner were the main philosophies they used.
Michelle Garcia Winner? one of them said. That’s really advanced stuff, I guess your son must be really high functioning, I wish we had those high functioning problems, we’re just trying to get ours out of diapers.
I wanted to tell them how deceptive the idea of high functioning is with him. How when he is rated in social/emotional development he is severely delayed and this causes him all kinds of difficulties.
But being the good NT that I am, I understood from her look and tone of voice that since my son was highly verbal and toileting and dressing himself that I had no idea what real autism was like. That she would trade anything for her child to be where mine is.
There is so much pain and so much truth in this feeling and I don’t know how to answer it. These are the moments where I am lost. I simply fell silent and listened, which is what I do most often, because I don’t want to cause anyone pain or stir up controversy.
But I also don’t want to feel like I have to give a laundry list of my son’s deficits to earn my place at the table. I’ve accepted that I have to do that to get him services, but I don’t want to have to do it to find community. It’s soul sucking to play that game and I need to dwell on his strengths for his good and mine.
So, I am asking, in all earnestness, how do I bridge this gap? How do we talk about this?
I agree with you! We are “in the middle” but definitely high-functioning. I feel terrible at times posting a triumph in a group because of thoughts of envy or jealousy. My son hasn’t been diagnosed with autism but has developmental delays in speech/language, sensory issues and a host of other dx’s in there. I feel like an outsider in an ‘Autism Moms’ group I joined two years ago before our son was diagnosed with said alphabet soup. He is just now being thoroughly evaluated for sensory issues soon to help majorly with some oral defensiveness amongst other things.
Thanks for posting this! I can’t wait to see other replies on how we can somehow just support each other.
I’m so glad you brought this into a post. I’ve been feeling this kind of hierarchy like evaluation within a group of people I’m dealing with irl also and it is devastatingly awkward. My son’s progress and his growth in language and understanding is surpassing an individual who is now in her late teens and I feel a growing chasm between her parents and me. I don’t want to believe its a sort of reverse one upmanship but that is the way it feels sometimes. We all struggle with our child’s diagnosis in different ways because it is a spectrum. Each child will manifests their autism differently. I wish we could all just give understanding, acceptance and support but it seems like human nature simply puts obstacles in our way more than it serves to being us together. And that is a shame.
I’m sorry for the purgatory-like hole you’ve fallen into. Sounds like its time to write a letter to a politician and an advocacy group while you wait for re-evaluation of your claim? I’m assuming you have appealed and are awaiting reconsideration.
Its so hard, and it doesn’t just happen in the autism community. My son has a chromosomal abnormality which isn’t linked to any known condition yet causes a whole raft of problems including learning disability, speech and language problems, autistic traits, dyspraxia, dyslexia… I could go on and on. And we feel isolated. He doesn’t fit in our local autism group because he only has autistic traits, and I feel like the parents there think I have it easier than them and they’re right that I don’t understand what true autism is. When we do to other groups for disabled kids I feel like he’s not disabled enough, he’s running round, talking and laughing… There’s a lot of support we’re not eligible for because while he has learning disabilities they’re not severe enough (he’s 10 and about at 5 year old level).
I often wonder how much of the feeling isolated is in my head. My own worries and guilt rather than genuine resentment or hostility. If I talked more would they listen to what his problems are, and sympathise?
My son doesn’t have a label or a name for his condition, and that’s hard. Thank you for helping me realise that having a diagnosis can be just as difficult and can be misleading. I hope by opening up this discussion you’ve started something which helps us all understand each other a bit better x x
Ohhhh…. ohhhhh….. crying… thank you. Thank you. As I was making breakfast for my daughter this morning I was thinking about these labels and feeling overwhelmed by them and the feelings they bring up and then I said, shift, shift your thinking. So i looked at my email and there you were. There was this post about your feelings, and your beautiful boy and I felt awful, but relieved you’ve written this and it was another little moment of understanding, of “getting it” because god I’m a SLOW learner and things seem to take me so long to really get, to fully incorporate in a way that they become less an idea and more a knowing. I don’t know if this makes sense, but here I am now, commenting on your blog and saying, Oh no, I’m one of those moms who looked away. I’m one of those mom’s who when you began to describe your son’s triumphs I couldn’t look at you AND listen AND feel the surge of envy, the surge of jealously, the surge of guilt that then followed or intermingled with those other surges, too many surging, swirling feelings – fear that my daughter wouldn’t get where your son has gotten, sadness that she might never, anger that i’m thinking these things – all of this happens within a few seconds and then I shut down because it hurts too much and I turn away. Not from YOUR words but from MY feelings. And so the conversation never moves forward, it falls into that darkness, it becomes lodged in those resentments, it goes nowhere, it just ends. So thank you for picking up those threads, for moving forward, stoically with another framework, a different truth, your truth because I can’t speak for anyone else, but I NEED to hear this. I HAVE to hear this, I really want to understand this. I so hate these feelings and I don’t want to have distance, I don’t want to feel separate from other parents just because their child’s version of Autism is different. I don’t want to feel these feelings of envy and the only way I know to move beyond is by admitting I have them. Feeling them. Really feeling them while doing absolutely nothing about them. Accepting that I am a flawed human being like every single human on this earth, forgiving myself for feeling them and then maybe, just maybe i can slowly, ever so slowly over time over many moments of doing this I will be able to get to a different place. And while all of that is happening, we can talk about these things openly, honestly, directly, because if we don’t, if one part of the group falls silent, we won’t ever be able to understand. We won’t, we can’t. I can’t and I need to. Now I need to go get some kleenex and really sob for a little while.
There’s really no easy answer. I know that a lot of other children struggle with things that my son doesn’t struggle with. My son sleeps really well and is not violent or angry. He doesn’t have any accompanying illnesses. He is strong and coordinated and has good gross motor skills. He transitions easily and travels well and we have no trouble going out to eat or to the movies etc. He doesn’t have any sensory issues with sound or touch or smell or bright lights etc. I know there are many parents who would LOVE to be able to say these same things about their children and I KNOW it must be really difficult for the ones who cannot. I recognize that we are “lucky” in those areas and I appreciate our “good fortune”. I also know that I am one of those parents who has a hard time sometimes hearing from other Autism parents about the things that their children can do that mine can’t. My son doesn’t talk. He’s not on the potty training bus. Heck, he’s not even standing at that bus stop. He has pretty poor social skills and fine motor skills. He practically doesn’t eat and we live in an area that provides woefully inadequate services through the school system but we can’t afford to get him private help. So while my HEAD knows that this is not about comparing him to other children or competing with other parents about who has it worse … my HEART is slower to catch up. Whenever I find myself thinking “oh please, I wish I had THOSE problems”, I have to stop and remind myself that those thoughts are not productive and don’t help anyone and everyone needs support for whatever their situation is. Just like I didn’t get to choose how Autism would affect my son, you didn’t either and we can only deal with what our reality is. This is getting kinda long but I guess the last thing I want to say is that … We gotta keep talking to each other and for me, reading posts like what you wrote help A LOT. Sometimes we just need a little reminder that even though we’re all in this differently, we’re still all in this together. Thank you.
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I agree. The labels don’t help. My child is different from yours, and so alike in many ways. It is unhelpful not to get services, to compare situations, to say he’s autistic, but, boy, is he bright. I’m listening. And I’ll keep talking with you, too.
The truth is we are always going to compare our kids to other kids, it seems to be human nature. I totally understand where you are coming from – my oldest boy has Aspergers, and he struggles, but to the untrained eye, he passes for “normal.” But I also see clearly where those other moms are coming from – my youngest is severely autistic, nonverbal with multiple disabilities (and my middle daughter is somewhere right in between them on the spectrum!). I have a friend who was confiding in me that she felt jealous of another friend’s “typically” developing daughter, when it seemed like everything was such a struggle for her son. I told her I understand, because I do, but inside I was screaming because I was at the same time looking at her autistic son and wondering why Mary couldn’t do half as much as he was. That’s why it’s called a spectrum, but that’s why it makes the comparison game so painful – on both sides. I can tell that when a bunch of us autism moms are at a party, the “regular” moms shy away. And it’s not that they are judging – THEY feel left out. It goes both ways. We all struggle. We all celebrate. We just need to learn how to do it together a little better. The only way for that to happen is for us all to keep talking to each other, and sharing with each other, just like this. Great conversation. Great post.
I know this may sound weird but I understand this from 2 different angles. On the one hand I have Twin B who is very verbal, understands more, & can communicate better but he has multiple sensory issues & behavioral issues that make him a handful to deal with. On the other hand I have Twin A who is over a year behind his twin in some ways & way ahead of him in others, who is very echolalic, & who is much harder to reach. In essence, I see both ends of this & depending on which child I’m talking about, I have either been included or excluded until I mention the other child.
It is a hard barrier to break through because sometimes there is no right or wrong type of autism, there is only the type of autism *you* deal with daily & it’s hard for others to see past “their autism” to understand that “your autism” may be different but it is just as hard. Maybe looking for the similarities instead of the differences will open up the door to communication to begin with & will allow you to find common ground to stand on before you delve into the differences.
I don’t know any other way to open the topic up amongst a group of your peers without first pointing out what makes you peers to begin with. Camaraderie based on shared experience has always opened the door for me. I wish you luck & know that I am here to talk anytime you need an ear & a friendly face.
As everyone else has said this is a tough one. I guess comparing is human nature. With my son he would be described as High functioning and manages very well if he is compared with children on the spectrum. He also does very well academically compared with NT peers but he struggles to make friends & interact socially in a way that would be expected so we never feel quite ‘at home’ in any group. Having read your thoughts & the comments I wonder if anyone truly feels accepted and it just highlights even more the importance of what we are all trying to do in terms of trying to gain, build and share understanding and acceptance that we and our kids are all individuals with different skills, needs and challenges
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I’m essentially in the same spot that you are. I think the best you can do is to try to document everything that happens so you have concrete proof to take to them and show them what your son is capable of. Most only see our children in “school mode” when their angelic demeanor makes other people wonder whether we have lost our minds thinking our children have special needs.
And then there is the drama they save for their mama, that is essentially hidden behind the front door and that no one really ever sees. How is it possible that these two extremes can coexist?
This post was terrific. I find myself in your shoes very often. My son is high functioning, but has his struggles….and I find myself comparing him a lot. I wish I didn’t, but I do. I love what Deenie said above…we’re affected differently, but we need to stand together. Hang in there…and know I am always willing to talk and keep an open mind…no matter how different our children’s struggles are.
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Yep. We r in the same boat. I’m actually still waiting for the verdict on whether or not my 6.5 yo son qualified for the Medicaid. Its been about 8wks. But I could tell from filling out the paperwork & answering a ton of questions related to his development, he most likely will not qualify. Of course one can’t lie on these documents as they cld always find out the truth. So it was hard to answer them truthfully bc it will not help him qualify: yes, he can answer the phone appropriately,dress himself,participate in imaginative activities,climb playground equipment, feed himself,use words like because&actually,ride a bike, follow 2-3 step commands,etc…. I’m sure they filed our forms under limbo bc they never read one quite like mine. For ex.) One ques asked, “In an emergency,does ur child have the ability to call 911&provide accurate info to the dispatcher?” Now for us, this is not a yes/no answer but those were the choices. So I squeezed in my own choice to circle: “maybe”. Lol I know it may seem an inappropriate answer to them but it really is a maybe for my son, in my house, in our life! I had space to explain so I did: My son knows how to dial 911, he can tell u what it means, he can even reinact a scene where he needs to call 911 infact he has plenty of times when playing w his brother. He can share info abt himself, his brother, his family, his house…However, in the event of a real life emergency it is impossible to predict his emotional state of mind, which at times, depending on the specific events happening,his ability to think clearly&focus on what’s important can be difficult due to an overwhelming emotional reaction (such as “scared”). If someone fell, he’d run to their aid. If lightning struck a tree that fell on our house, he’d hide under blankets on the couch due to extreme fear of thunder& lightning.(Thank God we live in the desert!)
I think this ex in a way sums it up&explains how it is hard for us. Yeah, my son seems normal, talks, plays appropriately, has no sensory issues,etc… But bc of that, he is expected to fit in & keep up w his NT peers. And in many ways he could. And I am so so grateful&proud of him. However (for ex) my son is not “typical” enough to join the local little league like most kids his age do. He will get there. But right now, he’d need accommodations (repetition, modeling, extra time) that no one else needs. He would def stick out in a team of boys which may lead to him having to put up w bullies making fun. Mommy would be arrested for assault. Lol
And then there’s the autism parents whose kids r, for ex, say, non verbal¬ potty trained, I feel like they look at our autism challenges & think, “oh yeah really? u don’t know what hard is,ur lucky ur kid talks,etc…” The thing is-I understand that completely! Why? BC my son & our autism challenges once were THAT DIFFICULT! I know what it’s like to clean shit all day long. To have eyes in the back of ur head & prepared to chase ur kid at any given moment. To be on high alert 24/7. Night upon night upon night of no sleep. To have to shop at the supermarket at record speed using only one hand. I’ve been there. I know. We r all at different stages, dealing w different obstacles, facing differents levels of “autism parenting”. But the truth is, the emotion behind it, the feelings it brings forth, the thoughts in our mind, the heaviness in our heart, the many ways it impacts family life, the attitude it creates in us….we all share that! So I wish those moms, the ones who look at us and think that- would realize just bc our daily struggles r not the same, (or not the same anymore), the fact of the matter is, there IS a commonality among us: Autism changes US. It affects our lives differently, but it changes us all the same.
My son is not like yours, my son has classic autism and he is non verbal. However, my situation doesn’t make yours any less. We are all in this together, regardless of where our children are on the spectrum. Take care…. and I hope that Charlie is okay.
First off, sorry if I’m making all these posts to your blog at once, it’s just my one track at a time Aspie mind.
That said, “high functioning Aspergers/Autism” as a diagnosis is like being sent into exile. You’re not NT, but you’re also not quite “legitimately Autistic” in some people’s eyes. It’s a sticky place to be. Trust me, I’m there and live it. I have a genius IQ, but have worked at mostly jobs below my abilities because I can’t deal with the social stuff. I also have difficulty working in teams. I also don’t act “Autistic enough” for people to believe that I have all these difficulties in my life.
One survival skill I have learned, and that Charlie may learn, is to mimic/mirror NT behavior so we can “pass” in the real world. And because we’re clever enough to do this, folks don’t think we have any problems. Trust me, I understand and sympathize with the parents of kids who are severely Autistic, and are barely able to function. I do understand the extreme difficulties they are going through. But I also wish they could understand the difficulties that people, like me & Charlie, and our parents go through. It’s no fun to be stuck between the cracks and not able to get the assistance you need because you seem “normal enough.” As Aspies, we have different sorts of problems, but they are problems none the less, and they are all so real to us and our families.
You sound like a great mom, and Charlie is lucky to have you. Keep advocating for him, and you. That will bridge the gap. We all deserve help & understanding.
{{{HUGS}}} for you…
Thanks for writing this. My son is high functioning and I find myself feeling a lot of guilt when I hear other moms talking about the challenges they face with children deeper on the spectrum. But I also get so angry at the “he seems so normal” crowd and having to fight tooth and nail for services in our underfunded district where the higher functioning kiddos are the first to lose services and aids during budget cuts, if we were even able to get them in the first place. I’m actually happy when his teachers report that he had a nonverbal spell or had a social problem with a classmate, because it constantly feels like the rug will be pulled out from under him unless they get occasional reminders that his brand of autism needs help, too.
We have three boys on the spectrum. our youngest has other issues such as OCD, ODD, ADHD, BiPolar, and anti-social personality. Every situation is unique. the important thing is to keep the conversation going. Excellent post!
My most recent post: http://www.whynotfathers.com/2012/08/good-conversations-about-autism-and-mental-health.html
It is a dilemma being on the high functioning side of autism. I often feel lucky on one hand and dismissed by those affected by lower functioning autism, yet not understood by those not affected by the spectrum on the other hand. It is so hard to get needed services on the higher end of the spectrum which is often a struggle families with lower functioning children do not have. We each have our own struggles and it would be nice if we could all support each other rather than make comparisons and judgements. Another difference is that on the higher end, it is easier to look at making accommodations as an acceptable approach to autism whereas on the lower functioning end, there is often a focus on finding a cure. I personally do not think we want to get rid of the many brilliant autistic minds.
Thanks, I feel like I learned so much from writing this post and understand these reactions aren’t about me or my son and they are the moments I need to open my heart more to other moms who are hurting. I am trying to move forward with that intention anyway.
OK, let’s make an analogy to sight. I am nearsighted. I wear glasses. They help a lot. I am not blind, I do not need a seeing-eye dog or a cane.
Does the fact that some people *are* blind mean that I am not nearsighted?
yes, you make an excellent point, one which I have a post about in my drafts folder because I have not yet been brave enough to publish it.
I loved your post and stumbled upon it on Twiitter…so glad! I think it is human nature for people to classify and categorize. We say our diagnosis and that puts us into groups that help others maybe understand more. With this classifying comes some judgement. I have a son who is 2e and although the neurologist says he is not, presents very much as a high-functioning aspie kid. He confuses so many because of his high verbal skills but really low social skills. This extreme discrepancy is hard to explain and he often doesn’t get the empathy or understanding that he deserves if he was formally assigned a label that others understood…or thought they did. Blessings to you and yours
I will say a prayer for Charlie to get the services he needs. As an adult with Aspergers, I wish that I had had more services available to help me with my anxiety and social disconnects growing up. I wish that someone had noticed something was up but going to twelve schools made it hard for them to see patterns. [Hugs]