Were any of you reluctant to get a diagnosis for your child?
My ex-husband had this train of thought that there was nothing wrong with [son] and I only wanted him to have therapies so I could 'break him and mold him into something normal.' My son was four by the time I left ex and got him started in behavior therapies. This child was initially (mis) diagnosed as severely mentally retarded. They said he'd never be toilet trained, never read, never learn to communicate properly. I adored my sweet, different son, but did not believe for a minute that was all that his future held. Turns out, it's not. Sure, he'll almost certainly never live independently, but thanks to ABA, speech therapy, occupational therapy and excellent special needs teachers, my son just graduated third grade this year. He communicates excellently, both verbally and with technological assistance. He is no longer an isolated, frustrated kid who can't do anything but script language. He is the best speller in his class, came home with two medals for reading, and has been fully potty-trained for four years now. He is still my sweet and obviously different son. He hasn't been broken ... more like, he's emerging. We gave him tools and he's learning how to use them.
It depends on how your insurance works, but likely you'd need to have a referral from a family doctor/GP to a developmental pediatrician. Then again, possibly not. If that we're the case, I'd suggest taking your daughter to your GP along with a written list of your concerns and telling him/her that you'd like her to be seen by a developmental pediatrician.
I also suggest that you contact your local autism society. Very likely they will be able to steer you in the best direction for your area. If nothing else, they will probably be able to recommend a doctor/doctors for a good, thorough evaluation.
Good luck, mama.
Yes, I can see people being reluctant, since SOME doctors are overusing diagnosis like ADHD, etc. and overmedicating kids. Also, there are so many issues a kid can have that will mimic autism.
My son was tested for autism at about 2 1/2 years old (too young for the CARS in my opinion, especially if non-verbal). The psychologist said he was borderline autistic and sent me on my way.
All of the therapists he was seeing at that time said they didn't "see it". They worked with autistic kids a lot, and felt that they were able to get through to my son and interact with him better than kids with autism. My sister told me to be careful of labels for a little while, as the chances of misdiagnosis are greater when they are still developing at such a rapid pace. I was able to get plenty of services and help with just the developmental delay label on his IEP.
Finally the speech came in, and boy did it! 95th percentile for language and vocabulary to this day...Reading and vocabulary are his strongest areas. A therapist tested him for Aperger's once and he scored pretty high. She suspected it was his other sensory issues, etc. that were causing him to score high, and that if he was re-tested in a couple of years he probably wouldn't score as high. We never had him re-tested. He was re-tested with CARS by a developmental pediatrician before entering kindergarten and he scored much higher into the "typical" range...not borderline. Two developmental pediatricians said he had dyspraxia/dysgraphia...which seemed to fit him well. A few OTs found him to have a lot of sensory issues as well. He has scored in the moderate range for ADD also, and he has tics...it's interesting that often these diagnosis go hand in hand with Aspergers and Autism.
In the end, the autism diagnosis did help a lot. I hooked up with local autism resources from the local university and school board. Although he may not have had autism, he still had a lot of the same issues. A lot of the families I met along the way chose not to disclose an early autism spectrum diagnosis to the school their child attended. I don't feel that it caused their children to suffer. Perhaps their children "outgrew" the features of autism due to being only "borderline" and receiving the proper therapies or perhaps they were misdiagnosed to begin with.
I know a few parents who are very vocal advocates, and it is fortunate that we have that. If it weren't for them, we wouldn't be where we are today, with so many kids getting help. I sometimes wonder, though, if their chid/children just want to get away from that label for one day!! Especially the older kids who perhaps were misdiagnosed at some point.
This is a sensitive topic for sure...with some being very pro-label, and some being very anti. Many think you need labels ASAP to get the earliest intervention possible, etc. Others think maybe there is nothing wrong with someone's brain being wired in a different manner, and perhaps it's the rest of us who need to learn to accept everyone and not try to change everyone. I think it depends on the kid...The family will have to decide what's right for them. Some will benefit from labels, some won't.
Edited by jmarroq - 6/30/13 at 10:59am
I'll add to the chorus that this is such a person issue!
I don't think there is one right answer to this question since so much depends on what is going on with your little one.
For us, we avoided labels because even the experts we saw were confused by our DS. Some people were happy to simply slot him into the Autism box at 2.5 but most were hesitant. That, coupled with the fact that we weren't seeing Autism ourselves, meant that we avoided a label because I really didn't believe anyone could tell what was going on at 2.5. By 3 I felt more confident (as his language improved a little) and so that is when we contacted a developmental ped (which I highly rec, so they can rule out medical as well as other developmental issues).
At 3 our dev ped's official diagnosis was a combination of severe language disorders (MERLD and verbal apraxia) which we 100% agree with and which really does help us understand his specific issues and has been an invaluable roadmap for us setting up therapies and school.
So, my thought is that, if you feel like you can get an ACCURATE diagnosis, then I think it is invaluable. However, I think you need the right experts, and the child needs to be old enough, and if those aren't in place, then I do think a wrong label can be harmful.
I hope this post doesn't come out sounding too negative, because it really isn't meant that way.
By the time YoungSon, at age 7, was officially diagnosed with ASD (PDD-NOS), I already knew he was on the autism spectrum. His IQ tested consistently at 72 for years, and he was clearly not functioning too well in many situations. I saw signs of sensory issues, apraxia, dyslexia, selective mutism, and many other conditions, but never felt any diagnosis really fit. He had an IEP since preschool (yes, you can get an IEP without a medical diagnosis - the school can do what they call an educational diagnosis), and speech therapy, reading interventions, and occupational therapy for years, to no particular effect. No therapeutic interventions had any positive effect at all. School was the worst experience for him - we had great IEPs, but even in the best situations, he didn't learn in that environment, and he found it hugely anxiety producing. By the time he was 9 or so, I took him out of school (to homeschool, unschool, really) and declined all therapy. We did try specialized tutors for reading, but at 14, he still tested at low 2nd grade level. I always knew the IQ tests missed his intelligence: he had amazing depth and insight and memory, and could express it with me. Just not with strangers or in a test situation. Over the years, we did try various therapeutic approaches, dietary changes, meds, homeopathy, and whatever else. But YoungSon benefited most from just being allowed to be who he was, and how he was.
10 years later, at age 17: I have no explanation for this, but in the last year or 2, he has dropped nearly all the symptoms that were such obstacles for years. Over last summer, he suddenly could read! No tutoring, no nothing. He has passed the high school reading proficiency test for graduation. Today, Jules Verne is his favorite author, and he is reading Thoreau for pleasure. Who would have predicted? He has dropped all his dietary aversions/limitations, and sushi is his favorite food (I swear he lived on popcorn for years!). His IQ tests at 125 now. He is still quirky as hell, but not in ways that interfere with life. He is polite, caring and funny, attends mainstream high school, has normal personal hygiene, has a couple good, long-term friends, declines all IEP accommodations, and is looking for a job. YoungSon still has autism. No question. But he has outgrown many of the symptoms, and taught himself coping strategies for most of the others.
In retrospect, his diagnosis was fairly useless, but harmless. From my perspective, it was sort of validating: confirming by professionals what I already knew as a mother. And it did help me understand some of the behaviors I was seeing. I don't see any way that he was harmed by the "label", even though it never really fit right or provided any interventions. I would never suggest that any one else's child will simply "outgrow" autism. I don't mean to say that interventions are useless, or that diagnosis is meaningless. But in our case, it was not the "answer".
I was very reluctant. I feared that a diagnosis could be a prophesy -- that labeling might make my child trapped in something she might just outgrow if left unlabeled. I think that what is considered "normal variation" should be bigger and include pretty much everybody. I think that its OK to be different from others, or pick things up in our own time. I don't think that life is a race and that the kid who walks and talks the soonest is winning. I didn't really like labels, because it seemed like putting kids into boxes and not quite treating them as people.
But I got over it. My DD has had a bunch of different labels at different points (the big ones are either PDD-NOS or Aspergers, depending on the eval, and she has a social anxiety disorder), because we were trying to figure out what would help her. She has struggled so much, and at times been deeply unhappy. I got her evaluations to try to figure out what would help, and evaluations lead to labels, and all of that ended up being helpful for her. It helped us, and others who work with her, understand her better. It helped us figure out what would be worth trying for her, which helped us find things that were truly beneficial. She's a far happier person now, and on her way to being a productive adult, and for us, part of the answer came through evaluations.
My thought is that if you are going to get an evaluation, think of it as just that -- getting an evaluation. For us, all the details that came with that were more helpful than the label. Also, think of it as a picture. Just as a picture is a likeness of your child at a specific point in time, an evaluation is a capture of them at point in time. You don't expect a photo of her when she is 4 to tell you what she'll look like as an adult, and honestly -- evaluations can't tell you what your child will be like as an adult either. They just help figure out in more detail what is going on with now, and what might be helpful next.
My DD is 16 and well aware of her various labels, and why some doctors would consider her PDD-NOS and some Aspergers, and she and I can talk about it. For her, the labels have helped her make sense of her self, and the ways in which she can see that she is different from most of the people around her. She has a good sense of self esteem, and its partly because she knows that she is completely normal for someone on the spectrum.
She has the option of letting other know her dx or keeping it private, as suits her. So it isn't something that she feels she needs to get away from, because it is already something that she controls.
I think that one of the things that changed for me over the years is that at one point, I disliked the idea of a diagnosis because I thought that "normal variation" should be bigger, but now I see autism, at least high functioning autism, as just a normal variation. It's totally OK.
OK is a much bigger place than I thought it ways.
Things have kind of played out the opposite for us as they did for mamhru -- my DD can't handle mainstream highschool. She takes classes at a community college instead. She is learning and thriving, and still very quirky!
When my son was younger and his behavioural issues were more easily tolerated by those around him (because he was so young) I was against getting him tested. I already knew we'd be homeschooling so I saw no value in pigeon-holing him (plus I was certain he didn't have autism because none of the symptoms I read about on the internet sounded like him).
Fast forward a few years and it's becoming apparent to me that no, he is not going to outgrow these behaviours, and now that he is older it is becoming a big problem. He gets easily frustrated and acts out physically. He can hurt other kids and behave in ways that are just unacceptable. No other mums are hovering around their kids, as they are too old for that, but I need to. Frankly, when I finally figured out it was autism it was a relief.
It has been a good thing for us in three main ways. First, it has given the children a language and a story around which to discuss their struggles and challenges. It was a huge relief to my daughter to know that there was an explanation for her struggles and quirks. She is actually very proud of being an Aspie, and considers uniqueness to be an asset. My son doesn't really remember not knowing he has autism, and while he sometimes complains that he wishes he didn't have it, it at least provides a context for teaching him about his particular challenges and how to address them.
Second, it has provided me with amazing support, through various members of the therapy teams, the local autism community, not to mention understanding and refraining from passing judgement on the part of the rest of the world. It's ridiculous but true: a child struggling with behaviour is judged and blamed but when a diagnosis is put out by way of explanation suddenly the attitude is one of sympathy and support.
The final bonus has been financial. From the large tax bonuses we receive for having kids with disabilities, to government funding, and educational funding through our homeschool program, we don't have to worry one about money when it comes to providing our children with the help they need.
I certainly wouldn't pass judgement on anybody who doesn't want a diagnosis: I really do respect that. But in this day and age when so many kids have it and so many resources are available, it can be a real lifesaver too. I think the kids themselves know that something is different about them, and having answers can really help them feel not so alone.
yes i was scared, in fact I know alot of parents of high functioning spectrum kids that were scared...but the thing is, I grew up undiagnosed and thinking I was just a freak. I couldn't do that to my son. So when my ex-husband started pushing for public school, i decided it was definitely time to get him dx'd. I don't regret it at all. It helps people understand him, helps him succeed at school, helps him have the tools to thrive and be a happy little boy.
it was definitely for the best
Another thing to consider is that identification of autism is becoming common knowledge, and I have seen some situations in real life where a person didn't know they were autistic and everyone else knew. This won't matter at age four, but it will matter at fourteen. Do you want your child to hear about their condition from you, the loving parents, or from bully-ish people who don't care?
Actually, EarthRootsStarSoul has a really good point.
As autism becomes more pervasive, and as those of us with kids on the spectrum get to the point where we can "spot one a mile away", I've noticed that there has been a whole new "problem" being discussed in the autism community, and that is what to do about kids who are obviously autistic but whose parents are either clueless or in active denial. It's not like it's any of our business, but what happens is those children naturally gravitate towards ours, and since we are all very open and "out" about our spectrum-y kids, it places us in a tough situation. One of us might jokingly (lovingly) comment on something the kids do that is "so Aspie" (like the time three of them simultaneously launched into monologue lectures about what species of frog one of them had just caught and none of them seemed to notice or mind).
I realize the OP is not talking about actively hiding a diagnosis from their kids, but when thinking about testing it is a consideration: that either another adult of a child with autism or the children with autism themselves will innocently let something slip that might cause grief.
In a separate event, my kindergartener mentioned a first grader by name at his school, and said something negative about him. And my third grader chimed in also that he seemed weird or something. The child has mild autism and is mainstreamed--I have not been told but I can also spot one 'a mile away'. I explained lovingly about his condition, and I do believe I am building compassion in my children. "I had a lot of trouble learning how to talk when I was a little kid. Some people's brains don't grow up as fast as their body, so they need extra help." And so on... The topic has come up a few times before when we have seen handicapped people. We've discussed learning disabilities and brain disorders. And it makes my heart happy that my children are so receptive to the message I want to teach them. But it just goes to show you, even five year olds can recognize another kid with odd behaviors.
So, the take home message: make sure your child is prepared to defend or explain their self from a position of confidence.
Totally agree with the need for our children to be able to understand themselves and explain to others why they might seem different.
However, I cringe mightily at the whole "spot one a mile away" thing. Please, please stop making assumptions like this - to the untrained eye, or to someone just seeing him on the playground, my DS can definitely appear to be on the spectrum. However, he is not. Instead he has severe language processing issues which create a lot of the same presentations as a child on the spectrum. A HUGE part of our struggle in the long arduous process of getting an accurate diagnosis and finding the right place for our DS has been the terribly condescending comments I have gotten from mothers of other special needs children who presumed to know what was "actually" going on with DS.
It was painfully harmful to ME to have the tutting looks of sympathy and eye rolls as I sought help trying to understand what on earth was going on with DS. I felt abandoned and alone even among the special needs community, the place I was supposed to be able to turn for support as I struggled through the emotional turmoil of discovering your child is not typical.
Yes, I have also met those parents in denial, but I assure you, after 15 evaluations from every expert under the sun, we are not confused about our DS's needs or diagnosis. To presume that you know better than the parent is not helping anyone, certainly not the child. Until you know the details of the situation, your presumed "expertise" is actually harmful.
I apologize if this sounds angry, but I am actually still very hurt by the way other parents treated me. Of course, now as DS gets older and things become more clear, no one does this any more, which is why I emphasized the need for an accurate dx to the OP above.
I am familiar with the fact that there are dozens of different learning disabilities, and if I can tell something is wrong with someone I tend to keep my opinion to myself. However, I have seen prejudice and discrimination acted out by other people (grown adults) against people who are unmistakably 'different'. Some even going so far as to self-righteously use the word 'autism' as an insult, like 'retard'. Of course, those are ignorant people I don't like and would never hang out with. One of my kids friends has Asperger's and they and all the neighbor kids were playing in my front yard having a grand old time. One of my neighbors had the balls to come over to my house and tell me that I shouldn't let that kid play at my house because he has autism and his mom probably did drugs when she was pregnant. My jaw dropped and I was just speechless.
The best I can do is teach my children real compassion and knowledge.
My point is that parents who attempt to hide a child's condition from him or her may be doing them a disservice. The condition may be obvious to others, and self-advocacy skills will be necessary.