No one can figure out my son's diagnosis

[Anonymous]

Anonymous wrote:OP, I think family therapy might be a good place to start. He's not like this because he's an only child or because his grandparents spoil him.

There's a few things in your posts which are troubling and you seem to be missing them. Why did you buy him a computer to take to school? He's in elementary!

You also don't seem to like what doctors tell you could be wrong and you are looking for some easy fix or magic wand. It doesn't exist. Whatever is wrong with him is going to take hard work on the part of the family and him to fix.

I bought him a computer because kids in his class were required to do research, communicate with one another via email about books they read, and type all papers. It was an inexpensive $300 computer with limited capability and IT WAS NEVER TO BE TAKEN TO SCHOOL. He did take it to school oncethough. He sneaked it into his backpack, which caused me to institute backpack checks each morning. He broke it at home btw, not at school also.

I am weary from all the work we have done for him. When I thought he might have ASD, I did floortime and RDI. I did it 49 hrs per week. I kept a notebook on it at the time. It was back breaking and took every bit of strength in me, but I didn't want to lose valuable time in early intervention. I started when he was 2.5 and kept it up until age 4.

We took himto Childrens Hospital, to various highly recommended psychiatrists and psychologists. I put him in the best schools. I researched every toy he owned to make sure they fostered thinking. I taught him to read at age 4. Trust me, we did a lot.

[Anonymous]

OP, please don't take offense at this, but is there any chance of heavy alcohol use at any time during pregnancy (if he is your biological child)? Perhaps even before you knew that you were pregnant?

[Anonymous]

I can feel your weariness and frustration. You and your spouse need to have a life outside of parenting this little boy. Also try to do something he really likes with him. Forget about if activities are educational or not. I do believe you need a good diagnosis and a plan; but you also need to keep your perspective. Try to find something about your son that brings you joy, and think of it when you feel overwhelmed. You may also benefit from talking to a therapist and getting some Xanax.

[Anonymous]

Anonymous wrote:I can feel your weariness and frustration. You and your spouse need to have a life outside of parenting this little boy. Also try to do something he really likes with him. Forget about if activities are educational or not. I do believe you need a good diagnosis and a plan; but you also need to keep your perspective. Try to find something about your son that brings you joy, and think of it when you feel overwhelmed. You may also benefit from talking to a therapist and getting some Xanax.

I totally agree. I'm exhausted just reading your posts. I agree about the advice to give Stixrud another call. Not every evaluator is good there but they're still the premier group. Our DS is a complex case (not as complex as yours, though very different). We just had our neuro-psycho done by Katia Frederiksen there and she was very good. Our educational consultant was impressed. I found her recommendations helpful as well as their list of contacts. Hugs.

[Anonymous]

Anonymous wrote:OP, please don't take offense at this, but is there any chance of heavy alcohol use at any time during pregnancy (if he is your biological child)? Perhaps even before you knew that you were pregnant?

Not offended at all. Actually I do not drink any alcohol.

[Anonymous]

While you are waiting for the evaluation I too urge you to read about the Kazdin method. It really helped my son.

[Anonymous]

Anonymous wrote:Time for a full neuropsych evaluation.

I doubt it's ASD. People with ASD are not "sneaky" and usually very rules oriented. It sounds like he has impulse control issues.

I would seek behavioral therapy also.

So not true. Thats right up there with "People with ASDs don't lie." WRONG.

Some people with ASDs are rule oriented. Some don't lie. Many are not rule oriented and can lie. My DS, who has an ASD can be perfectly sneaky when he wants to hide something.

Impulse control issues go with ADHD, which many people with ASDs have as well.

[Anonymous]

Anonymous wrote:I can feel your weariness and frustration. You and your spouse need to have a life outside of parenting this little boy. Also try to do something he really likes with him. Forget about if activities are educational or not. I do believe you need a good diagnosis and a plan; but you also need to keep your perspective. Try to find something about your son that brings you joy, and think of it when you feel overwhelmed. You may also benefit from talking to a therapist and getting some Xanax.

I have been seeing a psych to help me cope. But I still need a solution for him. I do not care whether his dx is ASD, sociopathy, or ADHD only. I just want a doctor out there to actually help him cope with life's challenges.

Thank you all for the referrals. I have already talked to my husband and, although he is skeptical, we are willing to try the Dr Shapiro classes.
As far as Stixrud, the last time I was there, I had a consult with a Dr there, it was not an intake. I asked them how they distinguish differences betw ASD and SPD or ADHD and SPD..and the woman was stumped. Can someone who has a child with similar issues tell me how Stixrud resolved their child's challenges? I would reconsider their practice if I had hope that they could help.

[Anonymous]

DS has a friend, early teen, who has been diagnosed ADHD. Friend was adopted so family history not known. Parents are older and he's an only child, but they seem fairly consistent with their approach, discipline, keeping kid active.

Don't know if it's only ADHD, but a lot of what OP has written is ringing a bell. Friend has stolen, mostly small things, and/or will take his parents things and show them off (so like steal money and show DS but then return it to his parents; take his Dad's bluetooth thing and pretended to have a phone). Will sneak laptop to school (he's in middle school and does need it at home for school work but isn't allowed to take it to school. Will "forget" where he's supposed to go/be and have his parents looking for him for 1-2-3 hours.

He once persuaded DS (who has his own problems, but being sneaky isn't one of them) to go off to a store to get junk food. We were hysterical looking for them. A few weeks later he tried to do it again but DS just stood outside house while friend went. Friend is super smart but doesn't do well in school due to absolutely refusing to do homework.

Wildly impulsive, brags, seemingly does or doesn't do things that just don't make sense. He's also incredibly sweet and caring, verbal to the point of being able to charm anyone, everyone likes him and wants to help.

Parents are doing everything, including therapies and meds, but there are only small improvements. Clearly not right therapy, not right incentives/disincentives, meds.

Not sure if this helps in the least, but just wanted to throw out there this set of similarities. Kid doesn't have a mean bone in his body and yet he steals and lies.

OP, I'm sure you're not a perfect parent, neither am I, but we all start out parenting in a way that we think is normal. We don't know we have extra challenging kiddos until we realize we have to ramp up the parenting. It sounds like you're doing a whole bunch and just need help figuring out the next steps.

I agree with Stixrud and also with Shapiro's classes.

[Anonymous]

Thanks, PP. Actually that child sounds very similar to my child. Almost identical, actually.

I agree with the comment about parenting. My parenting might have been great for any typical child, but was not enough for a child with my son's challenges. I never got a concrete diagnoses so never knew which way to turn for parenting advice. Tried many approaches though. We took Rene Hackney parenting classes, Dr Greenspan approaches, etc...

Before I give up, I will try Kazdin & Shapiro.

Did your DS's friend ever get help, and if so, from where? I am reluctant to give Stixrud another chance without at least one example of a child similar to mine who has been helped by Stixrud. I'd like to know how Stixrud helped that child. Perhaps someone out there will reply soon to help me have faith in trusting Stixrud again.

[Anonymous]

My friend's child has learning disabilities, ADHD, and Antisocial Personality Disorder. The child had many tests through the school and now at age 9 receives free schooling at a 1 to 3 teacher student ratio in Montgomery County. What has the school done so far? None of this is listed.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I can feel your weariness and frustration. You and your spouse need to have a life outside of parenting this little boy. Also try to do something he really likes with him. Forget about if activities are educational or not. I do believe you need a good diagnosis and a plan; but you also need to keep your perspective. Try to find something about your son that brings you joy, and think of it when you feel overwhelmed. You may also benefit from talking to a therapist and getting some Xanax.

I have been seeing a psych to help me cope. But I still need a solution for him. I do not care whether his dx is ASD, sociopathy, or ADHD only. I just want a doctor out there to actually help him cope with life's challenges.

Thank you all for the referrals. I have already talked to my husband and, although he is skeptical, we are willing to try the Dr Shapiro classes.
As far as Stixrud, the last time I was there, I had a consult with a Dr there, it was not an intake. I asked them how they distinguish differences betw ASD and SPD or ADHD and SPD..and the woman was stumped. Can someone who has a child with similar issues tell me how Stixrud resolved their child's challenges? I would reconsider their practice if I had hope that they could help[i][u].

OP - Stixrud and the like do not "resolve" anything - that is not their purpose. They evaluate and diagnose ONLY. After the diagnosis you walk away with a strategy or plan with "next steps" and of course referrals. They also do not write prescriptions if you're on the medication path. Only medical doctors can write prescriptions - in this case a psychiatrist.

Please tell me who at Stixrud did your intake? I know all the docs there, am curious which one was "stumped"?

[Anonymous]

You don't "resolve" many neurodevelopmental problems. The kids aren't cured. They learn ways to adapt and work within their limitations and strengths.

Family therapy sounds like a good idea.

[Anonymous]

ASD with behavior issues.

[Anonymous]

I don't have much expertise to offer other than parenting experience with a small subset of these issues. So I guess the first thing I'd offer is just empathy for your difficulties and the frustrations with getting a child with challenges where they need to go.

For what it's worth, you've mentioned perseverative interests, sensory hyperacuity, and difficulties with empathy and social understanding/behavior. Those all certainly sound like there could be ASD issues in play, but others have pointed out that there are challenges that aren't necessarily rooted in ASD. I think my main caution is that a diagnosis is only useful insofar as it leads to your child getting the help he needs.

No label or diagnosis applies perfectly to any child; your child is an individual, unique. A diagnosis doesn't magically translate into a solution, it only points to things that can be tried that have helped other children with similar challenges.

This is uninformed speculation on my part so please feel free to disregard it; but perseverative interests are often a result of difficulties in making sense of a chaotic world, causing the child to retreat to familiar scripts and routines. And some of the antisocial behavior described seems to reflect a failure of perspective-taking, an insufficient focus on others' perspectives relative to one's immediate wants. I don't think there are Pavlovian shortcuts to addressing these things, only the steady work of building up one's sensory management and social cognition and perspective-taking abilities.

Regardless, I wish you and your son well.