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Hi everyone,

A few months ago I posted a question on here about whether I should seek a second opinion for my now two-and-a-half year old. He had received a neurotypical diagnosis which felt out of the blue because the messages I had been receiving from his psychologist made me believe we were all on the same page- that something more was definitely going on, which I believed (and still do) is Asperger's. I got some fantastic support on here and am seeking it out again, so I'd love to hear from you all.

Moving forward to now: we did end up eventually hearing from the psychologist, who had me come in and explained that
"two years ago they would have diagnosed my son with Asperger's but it simply doesn't exist anymore." His demeanor was exactly what I needed it to be- he felt for me, he said they have other parents who are in the exact same situation and are frustrated, and he provided me with a ton of new resources. He said they were going to move ahead and treat him the same way they would as any child who had actually secured a diagnosis. So, we're seeing him once a week and are set up to interview in January for the autism clinic here in town to specifically deal with the aggression we've been having trouble with, which is worsening and becoming more complicated. I am happy about all of this, and it has added some peace to my life. Also, I have been working hard reading and learning, through books and the internet, and believe that my husband and I are now learning to "understand" our son more than ever, and cherish him even more. It feels good to have some amount of validation.

However, there are a number of areas of our life that are still getting worse. We are currently no longer seeing my husband's side of the family who has made it abundantly clear that they believe that our parenting is the problem and that they don't believe the diagnosis (we told them he was diagnosed because in our mind, it is what it is whether the DSM-V eliminated it or not and correct me if I'm wrong, but it still "exists" in Europe, right?) . They have said incredibly offensive and hurtful things. Right now we are content that they are no longer present, but we know this will probably not last forever as we live in the same area and people tend to cool down over time. Has anyone who is further down the journey been through something similar who is willing to share their story? Where I am at right now is that I am DONE. I have never been so done with anyone in my entire life, and honestly I'm in a place right now where I truly believe their lack of perspective is unhealthy for my child and don't want them near him until they can completely come around and learn how to interact with him, and having known them for as long as I have I personally doubt that is possible.

The other thing we're seeing is that our son's behaviors seem to get worse by the week. Or at least, that's what it feels like to us. I guess a better way to describe it would be to say that his strengths (language, technical/pattern thinking, relationship with animals, relationship with us (his parents)) are definitely getting stronger and his weaknesses are absolutely getting worse. His sensory needs and categories seem to be increasing and it's resulting in a number of different behaviors, the worst being biting. He was never much of a biter until now, other than his trampoline. Now he bites us, bites his own self, bites furniture and leaves marks and holes, and bites objects like books apart. His once "difficult but manageable" transition issues are deepening and have at times in the last weeks resulted in him legitimately physically attacking me to try to stop the transition from happening. Talking him through the transition beforehand isn't doing much, I think because he still is completely not in control of his emotions whatsoever. That aspect actually seems to be getting worse, too. He had his first recognizable (in that before I wasn't sure if it was just typical toddler tantrumming or what) 15-minute complete out-of-control meltdown over we're still not totally sure what. Luckily I think we handled it really well, but his emotional control is getting closer and closer to zero, or that's how we're feeling it, as is his impulsivity. He is also, far more than ever, completely ignoring us when we talk to him if he is engaged in an activity and much happier to be left alone on a different floor of the house playing or making lines. His very best behavior is honestly when he is left to himself. Also, interestingly, it seems his pain tolerance is getting far worse, as well. Can that happen? Every time he nicks himself in even the smallest way he now runs around, mouth gaping open in the "silent scream" of the immunization, to nowhere in particular much like "a chicken with its head cut off", practically delirious, until he can compose himself enough to actually start crying out loud and seek reassurance. Except now that reassurance always has to be the same thing- "I want to sleep in the rocking chair!! !!" Which means he needs to go to a specific rocking chair and be rocked to "sleep" (calmness) every single time. And every single time is not an exaggeration. So my second question is- does this whole "getting worse" phenomenon continue through the toddler years, or is this maybe a developmental phase or spurt? I don't know much about the actual "flourishing" of ASD, have heard only stereotypes, and of those stereotypes have seemed to experience both with him- that he has seemed "different" to us since birth, but also that age two came and BAM- things started changing rapidly. Can anyone tell me about the trajectory of their toddler's "development" of ASD through the years?

My final question is this- I want perspectives on my apparent "need" for a diagnostic label. I will admit, even after having been told that they would diagnose him if they could, I still feel like I could be 100% at peace, let my guard down even more, and proudly own the label and his behaviors if it were there. Don't get me wrong, I am already in the process of that. I am learning as we speak how to feel confident and in control and very proud of him despite the difficulties. His psychologist continues to reassure me that, at least within their health system, he will get whatever he needs regardless of label. Still, to me, there is something that feels "off" about that- that my son is getting services for "something but nothing". I know that this is a problem with me, and that if I were a different personality, or older, or further down the journey, this would not bother me, but I'm struggling with the self-reflection part of this where I figure out why this is such an issue for me and how I can help myself. Can anyone relate to this?

Thanks for reading this, I know it is long. I just feel like we as a family are in this big transition period for a number of reasons, and any guidance from people who have been here will be so, so welcomed and appreciated.

1) At his age, as long as he is getting services, it's OK to go unlabled. This happens with lots of kids. They are so young! And there is such a wide range of normal at this age. This page is full of people who were mistakenly diagnosed with various things at 2,3,4 years of age. And then they grew up, had a mental growth spurt. They aren't typical, but they are different from what was originally believed. So, a lot of doctors will leave kids this age without a diagnosis other than "developmentally delayed." The important part is that you are getting services.

2) Yes, it's normal for behavior to get worse when your baby becomes a toddler. These are hard years, even for parents of NT children. Hold on! I know it's hard but this stage doesn't last forever. He will learn better coping skills. At least, the vast majority of us do so. Part of parenting him long term is going to be learning how to balance allowing him alone time with insisting that he spend some time in the more social world, interacting with his parents, teachers and peers. But it sounds like you are on that one already.

3) Aspergers does still exist in the USA. It is still in the ICD - 10, which is the book insurance agencies use to decide who gets compensated for what treatments. However, the new criteria for autism include everything that aspergers used to have. If they are seeing children who are meeting the old criteria for aspergers but they think they aren't meeting the autism 1 criteria, they are misinterpreting the DSM V, in my opinion. But again, this is something that is often not sorted out until age 5-7. Its not unusual at all to go without proper diagnosis until then. Unless you start to have a hard time getting services for him. Then I humbly suggest that you raise some hell if they won't give him the label he needs to get those services.

Thanks so much for responding! This is really interesting. Let me explain exactly what the psychologist demonstrated to me and then hopefully you can tell me if you think there is a misunderstanding: He drew a line, which he divided into four equal sections. The first section furthest to the left he labeled "neurotypical". The second, "Asperger's". The third, "PDD-NOS", and the fourth "Autism". He said that until the DSM-V, that's what the spectrum looked like. Then he took his pen and he scratched out the first 3/4 of the line (NT, AS, and PDD-NOS) and said that the DSM-V got rid of them and all that is left is the top 1/4, which they now called Autism Spectrum Disorder. He explained that they did it because Asperger's was being way too over diagnosed, given to "anyone who had weird eye contact", and so now unfortunately we are left with all these kids who three years ago would have been on the spectrum but now don't meet the strict requirements for the new spectrum (the upper 1/4). I argued, "What do you do with all these kids who meet all the requirements for Asperger's? They still have needs." And he told me they give them services anyway. So that is good, but there is something that still feels off about that to me. I don't know what in the future will be harder for me to secure for him because he isn't officially diagnosed. Well, he is, again with "something but nothing". His diagnosis is "Other mental and developmental disorder typically arising in childhood or adolescence" or something similar.

Your psychologist is wrong. People who used to be diagnosed with Asperger's are now diagnosed with level 1, or "high-functioning", autism. They changed the label, that's all.
Pretty scary that this person is telling people with Asperger's symptoms that there is no diagnosis for them, and they're basically SOL. Jeebus.

I concur that you were told absolute nonsense. All the other categories of the autism spectrum were put under the umbrella heading of autism and then that was broken into severity ratings. There were some concerns when this was done that some kids were labeled inappropriately, just as there were concerns that kids would get under-diagnosed as a result of the new categories. This was all part of the sausage-making process.

That said, if your child is impaired, he should be covered by the new categories. There is not supposed to be an automatic mapping taking place based on the old diagnosis name--with kids labeled as AS being tossed out. Anyone with significant functional issues is supposed to be included in the severity ratings based on his/her actual strengths and weaknesses.

http://www.dsm5.org/Documents/Autism%20 ... 0Sheet.pdf

and

http://www.cdc.gov/ncbddd/autism/hcp-dsm.html


Diagnostic Criteria for 299.00 Autism Spectrum Disorder

Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive; see text):
Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
Deficits in developing, maintaining, and understand relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

Specify current severity:

Severity is based on social communication impairments and restricted, repetitive patterns of behavior.

Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):
Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day).
Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (e.g. apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

Specify current severity:

Severity is based on social communication impairments and restricted, repetitive patterns of behavior.

Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).
Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.

Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder.

Absolute non-sense and utter incompetence. If you had this on tape, I would suggest submitting it to the state medical board to have this person's license reveiwed. A ten year old could do a little research and understand more than this man.

I suggest you draw him a line. Put him on one end. Then put people who know a little about autism in the middle and actual experts in autism on the opposite side.

The old system works this way: Autism has the communication deficits, including lack of normal speech development, repetative behaviors, and social deficits. Autism can include people with or without intellectual disabilities, although more often, it was used only for those with intellectual disabilities. Aspergers was the same as Autism, except that children only qualified if they did not have a speech delay, and at least normal IQ was required. So basically, aspergers was "smart" kids with autism, but some of them are VERY affected, meaning that they have poor daily living skills and need a lot of help in life. PDD-NOS was used for children that had some of the traits of autism, but not all of the traits. Honestly, that diagnosis was all over the place. Doctors used it in very different ways. Some kids with PDD-NOS need a lifetime of assistance. And others are simply girls that don't look like your stereotypical boy aspergerians, so they gave them PDD-NOS instead.

The new system acknowledges that all of these disorders are really the same thing. It doesn't really matter whether you had a speech delay as a toddler, all people with autism have some things lacking when it comes to communicating with NTs. You can now be labeled autistic with or without intellectual impairment. The other criteria stand pretty much the same.

You can look all this up with a simple google search. The comparison is the DSM IV verses the DSM V.

There was a lot of fear as the new criteria came out that doctors would do just as your doctor did, and simply leave kids without speech delay without any diagnosis, but if you read the DSM V criteria, you'll see right there that its a deficit in communication, not only in speech. It might be hard to figure that out in a 2 year old without a speech delay. So maybe that was your doctor's problem? If there is no demonstrated problem with communication, there is no way to make an autism diagnosis. But there is a huge group of autistic kid who do fine with speech until they get older. That's when something called pragmatics comes into play. So basically, they know how to speak, but they don't use their speech normally. There are odd patterns. Places of mis-understanding and idiosyncrasies that make it hard to get your point across.

Honestly, if it were my kid, I would leave him in their center as long as he's getting the help he needs. The doctors matter less than the actual therapist who are working with him. Now, if any of them start drawing lines and ranking people according to how severe the are, RUN. They are the ones who are interacting with your kid. You don't need that in your life.

[/quote]It might be hard to figure that out in a 2 year old without a speech delay. So maybe that was your doctor's problem? If there is no demonstrated problem with communication, there is no way to make an autism diagnosis. But there is a huge group of autistic kid who do fine with speech until they get older. That's when something called pragmatics comes into play. So basically, they know how to speak, but they don't use their speech normally. There are odd patterns. Places of mis-understanding and idiosyncrasies that make it hard to get your point across.[/quote]

This is where things get complicated. They seem so proud and encouraged by his vocabulary and sentence structure, which is probably a year advanced if not more. He has around 12-word sentences with compound structure and is experimenting with sentence modifiers like "earlier", "certainly", "actually", etc. He is fantastic at memorizing phrases and is able to concoct creative rhymes and songs. He is 2.5 years old, of course that is impressive. I am fascinated by and proud of him on a daily basis. But, I've said to them before, just try it: ask him what his name is. So they do, and he says nothing or changes the subject to something he prefers to talk about. But then they call him by his name to make him turn to them and when he does turn around they say "See? No problem!". Then I give examples of how you can try to make a conversation yourself, where you, the adult, are in control but you may even try to make it easy on him by using a topic that should interest him, like talking to him about his cats or something. I would say 85% of the time he either ignores and pushes his own topic over and over again relentlessly ("What happened to that truck? What happened to that truck? What happened to that truck!!??") or makes up responses that may have to do with the topic but aren't true (You could ask him, "Where is your cat?" The cat is sitting on the couch in the same room. He will answer "Upstairs", while looking at the cat). This happens with books, too. He can memorize them and "read" them to himself but if you are looking at an illustration of kids jumping on the bed and ask him, "What are they jumping on?" he very often can't or refuses to answer. This is not the case if he is in control of the topic or taking to you about what HE sees in the book. So, I personally feel there is a huge gap between expressive and receptive language skills here. He has been to the speech pathologist and they saw everything that I just described and have him scheduled to begin seeing them in January to work on receptive language. But, I don't know... Perhaps this just isn't severe enough, regardless of how much the other behaviors and sensitivities control his whole life.

It might be hard to figure that out in a 2 year old without a speech delay. So maybe that was your doctor's problem? If there is no demonstrated problem with communication, there is no way to make an autism diagnosis. But there is a huge group of autistic kid who do fine with speech until they get older. That's when something called pragmatics comes into play. So basically, they know how to speak, but they don't use their speech normally. There are odd patterns. Places of mis-understanding and idiosyncrasies that make it hard to get your point across.[/quote]

This is where things get complicated. They seem so proud and encouraged by his vocabulary and sentence structure, which is probably a year advanced if not more. He has around 12-word sentences with compound structure and is experimenting with sentence modifiers like "earlier", "certainly", "actually", etc. He is fantastic at memorizing phrases and is able to concoct creative rhymes and songs. He is 2.5 years old, of course that is impressive. I am fascinated by and proud of him on a daily basis. But, I've said to them before, just try it: ask him what his name is. So they do, and he says nothing or changes the subject to something he prefers to talk about. But then they call him by his name to make him turn to them and when he does turn around they say "See? No problem!". Then I give examples of how you can try to make a conversation yourself, where you, the adult, are in control but you may even try to make it easy on him by using a topic that should interest him, like talking to him about his cats or something. I would say 85% of the time he either ignores and pushes his own topic over and over again relentlessly ("What happened to that truck? What happened to that truck? What happened to that truck!!??") or makes up responses that may have to do with the topic but aren't true (You could ask him, "Where is your cat?" The cat is sitting on the couch in the same room. He will answer "Upstairs", while looking at the cat). This happens with books, too. He can memorize them and "read" them to himself but if you are looking at an illustration of kids jumping on the bed and ask him, "What are they jumping on?" he very often can't or refuses to answer. This is not the case if he is in control of the topic or taking to you about what HE sees in the book. So, I personally feel there is a huge gap between expressive and receptive language skills here. He has been to the speech pathologist and they saw everything that I just described and have him scheduled to begin seeing them in January to work on receptive language. But, I don't know... Perhaps this just isn't severe enough, regardless of how much the other behaviors and sensitivities control his whole life.[/quote]

I wouldn't worry about him getting a diagnosis eventually. He is clearly one of us. And he is clearly very able. We have a way of finding our own path if you let us. You just have to survive toddlerhood to get there.

The thing is that the doctors have these charts of what a 2.5 year old should be able to do. And your kiddo is meeting all of the criteria for communication skills. Heck, with his intelligence, he might figure out pragmatics early enough to continue to be sub-clinical through out his schooling. But I doubt it.

As much as official diagnosis feels like a big deal to you parents. The truth is that a lot of these treatments they offer are not good for autistic people, especially those of us with high intelligence. So, it will still be up to him to figure out how to manage the world, whether he gets diagnosed or not. I can see why you want help now. The toddler thing sounds a bit off the hook. But as he gets older, he's going to need to be supported in finding ways to manage that are unique to him. That ABA stuff and similar route learning tools just annoy a lot of autistics, especially ones who are highly able academically. It's insulting to a mind who already sees the world with some degree of adult logic.

This is where things get complicated. They seem so proud and encouraged by his vocabulary and sentence structure, which is probably a year advanced if not more. He has around 12-word sentences with compound structure and is experimenting with sentence modifiers like "earlier", "certainly", "actually", etc. He is fantastic at memorizing phrases and is able to concoct creative rhymes and songs. He is 2.5 years old, of course that is impressive. I am fascinated by and proud of him on a daily basis. But, I've said to them before, just try it: ask him what his name is. So they do, and he says nothing or changes the subject to something he prefers to talk about. But then they call him by his name to make him turn to them and when he does turn around they say "See? No problem!". Then I give examples of how you can try to make a conversation yourself, where you, the adult, are in control but you may even try to make it easy on him by using a topic that should interest him, like talking to him about his cats or something. I would say 85% of the time he either ignores and pushes his own topic over and over again relentlessly ("What happened to that truck? What happened to that truck? What happened to that truck!!??") or makes up responses that may have to do with the topic but aren't true (You could ask him, "Where is your cat?" The cat is sitting on the couch in the same room. He will answer "Upstairs", while looking at the cat). This happens with books, too. He can memorize them and "read" them to himself but if you are looking at an illustration of kids jumping on the bed and ask him, "What are they jumping on?" he very often can't or refuses to answer. This is not the case if he is in control of the topic or taking to you about what HE sees in the book. So, I personally feel there is a huge gap between expressive and receptive language skills here. He has been to the speech pathologist and they saw everything that I just described and have him scheduled to begin seeing them in January to work on receptive language. But, I don't know... Perhaps this just isn't severe enough, regardless of how much the other behaviors and sensitivities control his whole life.[/quote]

I wouldn't worry about him getting a diagnosis eventually. He is clearly one of us. And he is clearly very able. We have a way of finding our own path if you let us. You just have to survive toddlerhood to get there.

The thing is that the doctors have these charts of what a 2.5 year old should be able to do. And your kiddo is meeting all of the criteria for communication skills. Heck, with his intelligence, he might figure out pragmatics early enough to continue to be sub-clinical through out his schooling. But I doubt it.

As much as official diagnosis feels like a big deal to you parents. The truth is that a lot of these treatments they offer are not good for autistic people, especially those of us with high intelligence. So, it will still be up to him to figure out how to manage the world, whether he gets diagnosed or not. I can see why you want help now. The toddler thing sounds a bit off the hook. But as he gets older, he's going to need to be supported in finding ways to manage that are unique to him. That ABA stuff and similar route learning tools just annoy a lot of autistics, especially ones who are highly able academically. It's insulting to a mind who already sees the world with some degree of adult logic.[/quote]

I'm about to drive for a few hours but I just wanted to say quickly that this post of yours is a blessing to me. If I were to hazard an educated guess about my own insides, I would say that probably the biggest reason I have trouble with the lack of diagnosis is the lack of "home". I know, and some of the more vocal members of the world around us have made it terribly clear, that he is not "of the rest of them", and to so strongly feel that he does have a "home" and a "community" out there for him if only he could be given the "magic words" of a diagnosis is a hard thing to sit with for me who sees such potential in him but also anticipates that someday he will need to find refuge in others who see the world the way he does, the way that no matter how much I love him, I will always struggle to understand. He is 2.5 now and so his small world of our home is enough, but that's not going to last forever.

We got the diagnosis today! ASD Level 1. It sounds like the Speech Pathologist noticed the error and did some work to correct things. Thank you so much for your clarifications!

Glad you got the right answer in the end

Thank you! And thank you for you guidance! I'm looking forward to learning more on here.