Autism and Overdiagnosis: Rampant, in psychologist's opinion
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Anonymous
You're a piece of work. You don't this child well. You are not living with this child. You aren't close to this child. He is part of your extended family. You aren't teaching this child and you aren't this child's psychologist. There are reams of information that you don't know about this kid. Despite this, you have concluded that the diagnosis MUST be wrong. When you're ignorant of subject, you might want to shut your mouth. |
Anonymous
It's about learning a behavior that can be generalized. Did you read the part where I said that speech therapy is also important? Speech therapy creates the building blocks for receptive and expressive language. Behaviorism teaches the child when to use speech and rewards the child for using speech, even if it's difficult for the child to do so and he/she would prefer to avoid it. That will work for MERLD. I think a lot of people with MERLD don't want to try ABA bjust because they are so very heavily invested in their kid NOT having an ASD, and it's a therapy that they associate with ASDs in their head. There's a huge stigma against ASDS among MERLD parents. There may be kids misdiagnosed as having an ASD when they really have MERLD, but there are plenty of kids who have an ASD whose parents insist on labeling as MERLD because they are so very, very terrified of the ASD diagnosis. |
Anonymous
u Where are you getting your information from? We tried Aba for six months. While it did no harm as we had a laid back therapist my kid got nothing from it. What did help was 4-5 day a week speech therapy. I do not know any asd kids misdiagnosed with Merld. We have been in intensive speech for 3.5 years and sitting in the waiting room most of us know what goes on with each other's kids. You clearly do not know Merld if you are recommending Aba and rationalizing why it will work when it cannot work for a child with severe receptive delays. My child could not understand behavioral plans. A reward or token system was useless. We tried, Aba tried. If you do not have receptive language someone telling you, you will get a prize for going potty with a chart means nothing. Aba may have worked once the language came in but by then the issues resolved themselves. There are kids misdiagnosed. Mine is one. My child at five no longer shows any asd signs so either he was misdiagnosed, we are amazing parents and he got the best possible services (the services was helpful) or we found a miracle cure even though autism cannot be cured. I am not terrified of the diagnosis. If my child has it, no big deal. But, I do have an issue with misdiagnosis and posts like this giving misinformation about how they feel a service can be helpful when the true Merld experts recommend against it and I cannot imagine you are one of those true experts based on your post. I want the services best for my child. I want to do everything I can for my child. We private pay or go through insurance for everything. I easily spend $15,000+ a year between co pays, private school (we are lucky our child is fine in a regular small private) and evaluations (our insurance only will pay for their local providers so we either use theirs or private pay). There is no denial here. We have been very fortunate that our child is pulling out of it, but like many families it has come at a huge cost from leaving my job to financial and lifestyle - instead of being at the playground, we are at speech therapy. |
Anonymous
+1 |
Anonymous
Wow. You're carrying a lot of baggage and projecting a lot. IME dealing with a HFA child is often a lot easier than one with a severe case of MERLD. I'm sure it's also a lot easier to raise a kid on the mild side of MERLD than it is a kid on the severe end of ASD. I've got both and I can tell you the therapies for the severe MERLD kid are more expensive/intensive than my HFA kid and it's far more difficult to get appropriate services/support in school. And, because it seems you harbor suspicions that MERLD parents are avoiding the ASD diagnosis, my MERLD kid was evaluated by NIH, KKI and Stixrud. All ruled out ASD even though the school is pushing it. He has some of the same symptoms but he doesn't meet the ASD criteria. We're not avoiding a diagnosis, we just want an appropriate one. When any of my kids have behavioral challenges (I've got NT kids as well), we often use the 'behavioralst' approach to get the behaviors we want (it's also effective in the workplace, too). You are correct this approach works in getting kids to speak. However, refusal to speak isn't a hallmark MERLD. MERLD isn't a behavioral issue, it's a neurological issue. ABA doesn't address the neurological deficits that cause MERLD. Breaking speech down into individual components may help kids with MERLD learn phrases but as the PP noted, it leads to scripting and rote sentences. Those have their purposes ('please' and 'thank you' start out as scripting/rote phrases) but doesn't lead to true acquisition of speech and language. Scripted/rote speech isn't appropriate outside of very structured environments. It fails during spontaneous speech/situations. |
Anonymous
i agree with a lot of what the camaratas have to say and agree with their opinion about my child but it was the same opinion as our speech therapist. No one is in denial. Early on there are similities like repetitive play, lack of eye contact and other behaviors, but most disappear after the speech comes in. A kid with autism continues to have behaviors that a Merld kid can outgrow. The issue is some of us have had evaluators just look at that without looking at more and then even acknowledge the symptoms are no longer there but do not reevaluate their diagnosis to be more fitting. The camaratas are good, better than most. They have personal and professional experience with late talkers and their information is pretty much all that is out there for those of us with late talkers. That is the only reason they have a following. They are basically it for these type of kids and they are on an education campaign right now to get better diagnosis and looking at the bigger picture. You can claim it is denial but you aren't with our kids every day. Kids with autism do not outgrow autism so how would you explain my child losing as symptoms? A child at two, can easily be misdiagnosed especially a child develops and changes so much from 1-6. If your child has aspergers, which technically does not exist anymore, you do not get the needs of a late talking or Merld child. Your child talked at a normal time frame. |
Anonymous
Not being able to generalize is an autistic trait. Most MERLD children generalize just fine. They also readily imitate and are eager to please people, so you really don't need the discrete trial training of ABA. Instead, you need to set up the world as visually as possible for them, and use only as much language as they are using, because their expressive level is also telling you their receptive level in most cases. So if they say "ball" you say "ball" followed maybe by "blue ball." ABA was never suggested for my severe MERLD child, because what would we use it for? Instead we used naturalistic speech therapy. |
Anonymous
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Also don't confuse ABA, designed for autistic children and those with severe cognitive difficulties, with behavior modification, which parents, bosses, teachers -- pretty much everybody -- uses. |
Anonymous
+1. Lagging receptive language is huge, and it impacts everything. That's the crucial problem for MERLD children. |
Anonymous
My child has Asperger's and ADHD. (And for all the MERLD parents who keep pointing out Asperger's does not exist anymore in the DSM neither does MERLD but since everyone keeps using the both terms, let's keep using them since we all know what deficits they describe). DS was diagnosed when he was 4 with ASD and 7 when Dr Black, our neuropsych, also diagnosed ADHD. I don't think either diagnosis is that bad since my son's symptoms are not particularly severe. He does great academically and is fully mainstreamed with IEP which only provides behavioral and social supports. As for the stigma, I could care less. At this point every single kid including every single one of my kid's cousins has been diagnosed with ASD, ADHD or both. No point in crying "woe is us"; our whole family including all the adults would qualify for one of these diagnosis if not both. Despite that we are all Ivy educated professionals with graduate degrees... And in the 1%. The only person I ever met who memorized metro maps was a Princeton debater a few yrs ahead of Ted Cruz. So not going to waste time complaining how much being diagnosed with ASD sucks. It is what it is. |
Anonymous
So, basically what you are saying is all kids are autistic and parents who see something very different in their kids are wrong as basically everything is autism and too bad and deal. Force your kids into inappropriate therapies and Ieps and allow people to do a one fit all and speech delays are really autism. I do not get why asd parents without speech delays chime in saying speech delayed parents are wrong. Asd may be right for your child but not for ours. Autism is a catch all right now just like add and ADHD when we grew up. It's far easier to see a kid for an hour doing a standard evaluation without digging deeper or talking to anyone in the child's life than it is to look at what is really going on and what is behind the symptoms. Or, better off holding off on diagnosis till you see some growth and progress in young kids which will tease out the diagnosis. Many people confuse receptive language with autism behaviors. People also see what they want to see. |
Anonymous
No, I'm saying MY kid is autistic and we deal with it. Certainly don't go around looking to get a pragmatic speech disorder + developmental coordination disorder + sensory processing disorder + low tone + ... Even though his symptoms are mild so we can avoid an ASD diagnosis and the "stigma" - which we have never seen. My child has never been treated poorly for his diagnosis, not by doctors, therapists or any of his teachers - if anything they overlook his deficits bc he is so bright academically, too much sometimes IMO. If your child was diagnosed with ASD after being seen for an hour by your doctor, you need to find a better doctor. |
Anonymous
Your not getting the point of this thread. It is not about and kids like your. We cannot simply go to another doctor. This is the only one our insurance will approve we go to to get speech paid for. Others have tried to get services authorized and we're not successful. It's him or nothing. We have private paid for Evans which are very different but in the end, we are stuck. Not everyone has provider choices. My child has been treated poorly. You are lucky if your child has not been. Very few people know how bright my child is and we have long given up and supplement at home. Since he's had so many negative experiences he is very reserved outside our home and speech therapy. Just because you do not have the experiences of misdiagnosis and people treating your child poorly, then that does not mean others of us have. Why even comment when the pic does not impact you? Your child is properly diagnosed. It's a non issue for you. If you felt your child was misdiagnosed, would you just agree or would you try to find the right diagnosis and services to make your child successful? |
Anonymous
I've got a kid with a severe language disorder that is often mistaken for autistic. We've seen the Camarata's. We battle the school and spend thousands a year on advocates. I understand the rough road you're on and I'm not the only one. Many of us have similar tales. But, you are reading these posts with a warped prism and you are incredibly defensive. You are not seeing commonalities in our experiences and, instead, dwelling on the differences and your own struggle. There are always going to be people who are skeptical of someone's post, don't be one of those people. Also, I understand the challenges of insurance and limited providers. We do a lot that's out of network but we also participate in NIH/KKI/JH research studies. I understand going to a doctor you don't like just to get something covered under insurance. But don't limit yourself. Find a research study and get more information. It's what we do. It's free and it's world class. |
Anonymous
I wasn't responding to you but to the pps who seem to think getting an autism diagnosis is a choice and that those who are high functioning on the spectrum should be treated by their symptoms to avoid the label and the stigma from an autism diagnosis. |