What could this be?

[Marie131]

It's been a long road w/ my 8 y/o son and his many quirky behaviors that I have finally come to face the fact that I think there is *something* more to his quirkiness than just his personality.  I have had my mind racing trying to figure out what it could be.  I've flip flopped from dysgraphia and/or dyslexia (he has handwriting issues), to SPD (he has sensory issues) to ASD. 

 

I think it's more than just dyslexia (or whatever) or SPD as I think there is something underlying that is causing these things.  If they were isolated in and of themselves then fine, but he also has funny little behaviors that suggest to me that there is something more.

 

Where to start...

 

Social interactions have always been different for my son.  Where other kids develop friends, mine seems to be the social butterfly who flits around from person to person depending on whether the play is in his interests or not.  He is very focussed on his own ideas and when the play moves on to other areas he loses interest and would rather be alone.  He's the same way in conversation, he wants to talk about his own ideas and often it feels like he is talking at you rather than with you.  He does not seem to understand the reciprocity in social situations and is very self focussed.  He also totally misses social cues and can behave completely inappropriately jumping right into strangers personal space and talking to them (usually in a way that wouldn't make any sense to them - like repeating a bit from a movie or repeating a thought that he is fixating on), or not suppressing his thoughts and vocalizing things that are best kept private.  He also tends to speak very loudly when we are in public.

 

He is very busy, always on the move, always thinking about something, always working on his next project.  At the moment, he is really interested in stores and selling.  He is always setting up a store, making signage for his store, making up price lists, setting up stands in front of our house, turning his grandparents house into a store, rearranging their pantry for his store (and on..and on...).  It's like an obsession, it takes up most of his time and the vast majority of his play.  He can be very impulsive and get himself into trouble when he is focussed on his ideas.  He's very narrow in his interests, but the things that interest him are all consuming.

 

He has a bunch of sensory issues.  He is hypersensitive to touch, he can't stand hair cuts, totally over reacts to pain.  We took him for allergy testing and even just the doctor's pen on his skin put him into an absolute meltdown.  He can't handle loud noises, he puts his fingers in his ears when he is over stimulated or there is a loud noise that is bothering him.  He has a problem with textures, won't eat anything if it is touching another food or if it is "squishy".  He has problems with both fine and gross motor skills.  Took him forever to learn to ride a bike, refuses to play team sports (not sure if it's b/c of the social skills, his perfectionism or his motor skills but he definitely has anxiety when it comes to sports and won't even attempt to play any type of sport even at home with his family).  He has trouble dressing, cleaning himself, eating with utensils, using a pencil. 

 

He's prone to melt-downs and has a lot of anxiety.  He often will refuse to try something b/c he is afraid he is going to fail.  He used to play card games with us but will no longer b/c he can NOT stand to lose.  He does not adapt well to change. 

 

On the other hand, he is super smart.  Especially with factual information such as science and history.  His favorite show has been NOVA since he was a preschooler.  He picks up little subtleties that others miss. He forgets nothing, he remembers everything and he seems to be more aware of what is going on than anyone else.  We call him our canary in the coal mine b/c if something is off in a situation he will let us know it!

 

His preschool teacher wanted me to send him for an assessment when he was 3 or 4.  I had a total knee-jerk reaction and needless to say an assessment never happened.  I am going to get one now. 

 

This is just a little snippet of our boy, there is so much more.  I don't want to go on b/c I'm afraid I will never stop.

 

Does this sound like "something"  or am I describing a typical 8 y/o boy?  Somehow I don't think so b/c he isn't like the other 8 y/o boys in our neighborhood. 

 

Feedback?

 

[Lecka]

I recently read The Complete Guide to Asperger's Syndrome by Tony Attwood. It might be worth a read from the library.

 

For dyslexia, the traditional best book is Overcoming Dyslexia by Sally Shaywitz. It is a book about kids who have a hard time sounding out words. If he can sound out words and didn't have a really hard time learning, it might not be the best book.

 

There is also a dyslexia processing style described in Dyslexic Advantage by Eide. It is a good book and not necessarily about trouble reading.

 

Honestly though I would check out the Tony Attwood book, it has a lot of chapters and might have some ideas.

[Jennifer-72]

First off, hugs! It is never easy to write out something like that.

 

I do think you have some cause for concern and I think it is wise to seek an evaluation. The types of social difficulties you are describing definately fit in with a ASD dx, but obviously they can be part of typical development as well. That is why it is probably best to seek out an evaluation so that you can get some answers to help going forward.

 

If you are looking to do some reading on ASD, Tony Attwood's book The Complete Guide to Asperger's Syndrome is helpful.

[Lecka]

Oh also he sounds like he might be gifted? I don't know anything about gifted resources but maybe someone else will. There is a term 2E that means twice exceptional, that comes up.

 

He sounds like a cool kid!!!!!

[Lecka]

Oh also he sounds like he might be gifted? I don't know anything about gifted resources but maybe someone else will. There is a term 2E that means twice exceptional, that comes up.

 

He sounds like a cool kid!!!!!

[kbutton]

My son was recently diagnosed on the spectrum and also has dysgraphia (not sure if it's processing the skills in his head or motor-based yet) and SPD. I second the Tony Attwood book--it is very positive as well as informative. I borrowed it from the library and will be purchasing it. My son is also gifted, and the resources at http://www.hoagiesgifted.org/ and http://giftedhomeschoolers.org/ are helpful. If you search the forums, you can find a recently revived thread about ASD/PDD-NOS resources. You might also look up podcasts or streaming audio from the Bright Not Broken radio show--the whole program is designed for twice-exceptional kids who are on the spectrum, have ADHD, etc.

[PeterPan]

You're going to do the whole thing: psych eval, OT eval, vision eval, etc.  They'll come up with the labels.  Clearly he's right-brain dominant.  That's why you're seeing that extreme creativity.  Clearly he's got sensory issues, which is why you're going to do the OT eval.  You want more help understanding how he thinks, how to connect with him, how to teach him, so you'll do the psych eval.  The vision eval is just a bonus.  Do it with a developmental optometrist, get just the regular exam, but ask them to screen him for the developmental stuff.  Sometimes when kids are low tone or sensory that have that going on as well.  

 

Sometimes these kids turn out to be VSL and do better with visual spelling methods.  You could try methods like in Freed's book "Right-Brained Children in a Left-Brained World."  (visualize, then spell aloud backwards)  If spelling was driving you to think dyslexia, that VSL thing could be part of it.  For the rest, well the psych will try to tease it out by doing a CTOPP (phonological processing) exam.  My dd's score was 20%-ile lower than her reading in spite of years and years of SWR, but not enough to get her a dyslexia label.  

 

Yes get the evals.  Don't worry right now what the label is.  Put your energy into finding the best psych you can, someone who has a reputation for giving really thorough, really helpful feedback.  Yes you want them to be someone who's experienced with 2E and ASD kids.  

 

And it's ok that it took you a while to accept it and work through that.  Did me too.  :)

[Marie131]

Thank you so much for your responses.  The Tony Attwood book is available at my library, I am hoping to get it tomorrow!  Thank you for the feedback and resources.  I will look into those. 

 

I have been feeling a bit reluctant to seek an evaluation b/c I am afraid of wasting professionals time.  Thank you for the reassurance that this is worth looking into.

[geodob]

The professionals are their to provide you with an understanding, to avoid wasting your son's time.

Where your son's time is the priority.

[SadieMarie]

Hi Marie, I remember well coming to the realization that something was off, or different or beyond quirky with my dd.  Everyone was telling me she was fine, or just really bright...  but sometimes you just know as a parent.  Good luck finding the answers.  Getting an evaluation is the way to go IMHO if you have the means to do so.  We got the best help and information from a neurospsych evaluation.

[PeterPan]

Thank you so much for your responses.  The Tony Attwood book is available at my library, I am hoping to get it tomorrow!  Thank you for the feedback and resources.  I will look into those. 

 

I have been feeling a bit reluctant to seek an evaluation b/c I am afraid of wasting professionals time.  Thank you for the reassurance that this is worth looking into.

 

You mean like will you get in there and the guy/gal looks at you funny and says why are you here, the kid is normal, you were just paranoid?  Nope.  You have PLENTY of indication that it's time to get some evals, but even more than that I think ANY can be a better teacher when they know what they're dealing with.  So no matter what, if it's simply that you need more help, it's still worth it.

 

Our psych was EXTREMELY nice to us.  You can talk with them on the phone and pick one you like personality-wise.  They're going to put you at ease.  Like geo says, they're there to help you, not the other way around.  :)

[herekittykitty]

I'm going to be direct - it sounds very much like Asperger's to me.  Tony Atwood also has a web page with some descriptions.  

http://www.tonyattwood.com.au/index.php/about-aspergers/what-is-aspergers

 

Getting a diagnosis is always really hard.  I cried a lot while waiting for my son's testing results.  But in the end you will be better for knowing.  

[kbutton]

My son was recently diagnosed on the spectrum and also has dysgraphia (not sure if it's processing the skills in his head or motor-based yet) and SPD. I second the Tony Attwood book--it is very positive as well as informative. I borrowed it from the library and will be purchasing it. My son is also gifted, and the resources at http://www.hoagiesgifted.org/ and http://giftedhomeschoolers.org/ are helpful. If you search the forums, you can find a recently revived thread about ASD/PDD-NOS resources. You might also look up podcasts or streaming audio from the Bright Not Broken radio show--the whole program is designed for twice-exceptional kids who are on the spectrum, have ADHD, etc.

 

I am so excited because my personal copy of the Attwood book came in the mail today. I also ordered The Survival Guide for Kids with Autism Spectrum Disorders by Elizabeth Verdick and Elizabeth Reeve after hearing them speak on the Bright Not Broken podcast. It looks like a really promising book to go through with our son. I thought I'd throw that out there as another resource. It's very, very practical and covers a lot of ground in a kid-friendly way.

[prissygirls]

My 9 year old dd was diagnosed with PDD-nos at the age of seven. We knew that something was a little off with her but never guessed it was ASD. I use to work with kids with Autism and I never saw it. But now that I know it makes perfect sense. She can be a lot to take at times but is a very sweet kid. I am sure that once you seek your evaluation your questions will be answered. Hugs to your family

[Marie131]

Just wanted to update that I discussed my concerns w/ my son's GP and he indicated that the behaviors definitely have an ASD flavor.  He is referring us to a ped who will send us for an assessment.  We are in Canada and this process could take some time.  My next step is to  bring my concerns up with my support teacher and request a psycho-ed.  Hopefully it won't take long to start getting some answers.

 

I will update this post as we go.

[Jennifer-72]

Of course, it is not easy to hear from a doctor that your concerns are warrented, but I am glad to hear that at least the process has been started. I am in Canada as well. Dont forget to check out your local autism association they may have some helpful pointers in navigating, and hopefully speeding up, the dx process.

[Marie131]

Just updating that we are still waiting to see our ped (appointment is next month) but our resource school has done a bit of testing on him and though it is not diagnostic they have identified a few issues that we could be dealing with here.  Dyslexia, dysgraphia, giftedness and ASD are all on the table.  He has poor working memory and processing speed but has an excellent long term memory, this doesn't surprise me a bit.

 

I read the Tony Atwood book and it sounded all too familiar.  I won't be surprised if this is what we're dealing with.  It is funny that I never even noticed he flaps his hands and spins until I started looking for behaviors.  I actually feel a bit embarrassed, my degree is in Psychology and I left a career where I worked with autistic adults but I never even considered this is what he could have.  Funny how you can overlook something that is right under your nose!

[Walking-Iris]

Sometimes we just don't want to know. My oldest ds has been dx'ed PDD-NOS, OCD, SPD and now AS (Aspergers) which all falls under an ASD umbrella. It's an alphabet soup of confusion at times. And different testers may even give you different labels. I remember I would get pretty upset at anyone who tried to hint to me that something might be off. It felt almost as if they were criticizing my kid or something. 

 

But evals and speech, OT, and whatever you can find really helps. I pretty much cried my eyes out when my ds was 4...still do at times to be perfectly honest. But you get used to a different kind of normal. 

[Marie131]

Another update; we saw the ped and she said he is on the spectrum and is sending us for an assessment to confirm/find out just where on the spectrum he lies (probably Aspergers).  She also feels he has an LD (of written output?).  Interesting, dyslexia never came up which is what the school keeps pushing, but I really don't feel it is as he can read.  In any case, the big issue we are dealing w/ is the probable autism.  We are going to have a psych-ed done privately and either wait for the public autism assessment or pay for it ourselves privately (or try to get school $$).  So it will be interesting to find out and hopefully it won't take too much longer now.  The ped also mentioned his hyperactivity and anxiety would decrease once he starts some therapies.  I really hope this is true.  Poor kid, it really shouldn't have to be so hard.

 

I saw all this coming, but it still is a lot to take in.

 

I was also very pleased that the ped was supportive of our homeschooling, she said homeschooling is the best thing for him as he would not do well in school (which is something *I* already knew but it was good to have the affirmation). :)

[Walking-Iris]

Our neuropsych has said the same thing about homeschooling really being a great thing. 

 

A neuropsych eval will really help you figure out a few more things. If you can get some occupational therapy or speech therapy, those are helpful as well. 

 

((hugs))

 

It will get easier as you start reading and researching, changing around his diet, adding different vitamin supplements etc.  

[kbutton]

Another update; we saw the ped and she said he is on the spectrum and is sending us for an assessment to confirm/find out just where on the spectrum he lies (probably Aspergers).  She also feels he has an LD (of written output?).  Interesting, dyslexia never came up which is what the school keeps pushing, but I really don't feel it is as he can read.  In any case, the big issue we are dealing w/ is the probable autism.  We are going to have a psych-ed done privately and either wait for the public autism assessment or pay for it ourselves privately (or try to get school $$).  So it will be interesting to find out and hopefully it won't take too much longer now.  The ped also mentioned his hyperactivity and anxiety would decrease once he starts some therapies.  I really hope this is true.  Poor kid, it really shouldn't have to be so hard.

 

I saw all this coming, but it still is a lot to take in.

 

I was also very pleased that the ped was supportive of our homeschooling, she said homeschooling is the best thing for him as he would not do well in school (which is something *I* already knew but it was good to have the affirmation). :)

 

I'm glad you are getting answers and that you've updated us.  I think your ped is right that you'll see results quickly. I feel like a diagnosis freed us up to help our son in the best and most appropriate ways instead of worrying he had issues because we were somehow failing him. I hope you find relief in knowing what's going on, though I know that a diagnosis can bring a grieving time as well. My husband had a little more of this than I did--I'd known something was up for so long that I've mostly been happy for the diagnosis. I feel like I find a new, supportive piece of information nearly every day. I've also met quite a few folks (without trying!) who have kids on the spectrum and who are willing to talk about it.

 

Our son really let down his guard once his anxiety subsided. He had been spending so much time trying to blend in that some of his sweet quirks really came out of the woodwork when he relaxed. It confirmed the diagnosis for us and made it much more clear (in a positive and sometimes funny way) what developmental things we need to work on. While that could sound negative, that aspect has not been negative at all; we've seen quirks that are really endearing and show how innocent and sweet he can be in his own way (instead of defiant and frustrated because he felt out of control). 

 

For now, lots of hugs as you wade through the flood of information and the rush of feelings/concerns.

[OneStepAtATime]

I've just been kind of following along, but I thought I would send hugs of support and say I am really grateful that you have a doctor who is supportive of homeschooling,  Our pediatrician knew nothing about dyslexia, dysgraphia, dyscalculia, etc. and had no suggestions for where to go for help when we finally admitted (to ourselves and to her) that there were issues with the kids ability to learn in certain areas.  She also was not supportive of homeschooling, and frankly neither was nearly anybody else in a professional position that we went to (before we finally met the person who gave us the diagnosis that actually helped).  Glad things are working out.

 

Best wishes to you and your family.

[Marie131]

Any good book suggestions other than the Atwood book?  I'm feeling the need to research.  TIA!

[kbutton]

The Survival Guide for Kids with Autism Spectrum Disorders by Elizabeth Verdick and Elizabeth Reeve is written for kids, but we're finding it helpful for talking to our son.

[Marie131]

Another update....we had his government funded assessment and it was a joke.  The psychiatrist spent 30 minutes w/ my son and judged him to not be ASD despite the interview strongly suggesting otherwise.  He said my son was too well behaved and creative.  He caught him on a good day.  We were told his social problems are due to him not having practice socializing since he's homeschooled.  He told us to put him in programs and have play dates.  He told us to put him in school.

 

The psychiatrist obviously thinks we live in a homeschooling bubble where we don't leave the house or invite others in.  He is mistaken.

 

The dx we got was ADHD-unspecified (despite him telling us that he doesn't meet the criteria for ADHD), GAD, SPD, giftedness and a LD.  He didn't test for giftedness or LDs.  While he was conducting the ADOS he told my son that he needs to go back to school.

 

I'm not impressed.  I think the clinician is biased.  We have a psycho-ed coming up in a few months and will ask the psychologist for a full evaluation.  I want a second opinion.

[kbutton]

I'm sorry. That's really frustrating. It sure looks like a lot of acronyms that could lead up to an umbrella diagnosis.

[OneStepAtATime]

Another update....we had his government funded assessment and it was a joke.  The psychiatrist spent 30 minutes w/ my son and judged him to not be ASD despite the interview strongly suggesting otherwise.  He said my son was too well behaved and creative.  He caught him on a good day.  We were told his social problems are due to him not having practice socializing since he's homeschooled.  He told us to put him in programs and have play dates.  He told us to put him in school.

 

The psychiatrist obviously thinks we live in a homeschooling bubble where we don't leave the house or invite others in.  He is mistaken.

 

The dx we got was ADHD-unspecified (despite him telling us that he doesn't meet the criteria for ADHD), GAD, SPD, giftedness and a LD.  He didn't test for giftedness or LDs.  While he was conducting the ADOS he told my son that he needs to go back to school.

 

I'm not impressed.  I think the clinician is biased.  We have a psycho-ed coming up in a few months and will ask the psychologist for a full evaluation.  I want a second opinion.

Absolutely get a 2nd opinion.  Yes, the clinician definitely sounds biased...and rather useless as well.  So sorry you are having to deal with someone so ignorant and unprofessional.  Good luck with the psychologist.

[Spring Flower]

 We were told his social problems are due to him not having practice socializing since he's homeschooled.  He told us to put him in programs and have play dates.  He told us to put him in school.

 

 

We are currently on the waiting list for my son to be evaluated. I'm so afraid this is what they will tell me. I often get comments like this from family or friends. They have no idea that I keep him home BECAUSE of his behaviors. His behaviors are NOT a result of keeping him home. 

 

:grouphug:  I hope things work out for you and you are able to get the services you need! 

[Marie131]

Thank you everyone, I've been feeling pretty rotten but I did expect this.  In my area, autism comes w/ big funding dollars and I'd been warned that the government does not like handing out diagnoses.  I was not pleased w/ the evaluator and am glad I didn't have to pay for it.  He didn't look at any of the supporting documents I brought in, he forgot our names, he kept cutting us off and he had obviously not looked at our file.  He also barely spent any time w/ our kid  Not good enough to get a full picture of his behaviors.  I'm really disappointed.

 

I'm dealing w/ family now who are all "I told you so" and that makes this all that much more worse. 

[PeterPan]

Wow, so sorry.

[Spring Flower]

 

I'm dealing w/ family now who are all "I told you so" and that makes this all that much more worse. 

 

:grouphug:  This is another fear of mine!

 

This confirms my choice to not tell anyone that we are having DS evaluated.  We live very far from family and they don't know DS at all or the struggles we have had. I'm sure I would get such responses from my family. Thanks for sharing your journey. It seems like we are in similar situations. I'll be watching for updates. 

[PeterPan]

Yes, you only want to talk labels with people who understand them.  I don't know that I've ever talked with my dd's grandparents about her evals.  They have no basis for understanding or interpreting the information, therefore it's none of their business.  Don't talk with gossips, local people, etc.  Talk with people who know what the information really means and what to do with it and who will give you HELP and support of some kind.  When I talk with some people (church people), their response to the evals is a really hushed "Don't you think that doesn't exist?? Have you heard of... That's what my kid turned out to have..."  Sorry, wasn't the case here.  Can't get any help from people who think your kid doesn't exist, therefore it's not worth it to talk to them.  And anybody who faults you for getting evals or making informed choices isn't worth talking to about those things.

[kbutton]

 

I'm dealing w/ family now who are all "I told you so" and that makes this all that much more worse. 

 

Yuck. That is really not fun.

[Jennifer-72]

I am so sorry you were treated that way, by someone who should be a professional! Also sorry to hear you have family that is being less then helpful. I would venture to guess they would be the same people who would most likely dismiss a dx if it had been given.

 

Do you have a local autism association? Ours here is quite good and they often help families navigate getting a dx and maintain a good list of professionals for you to follow up with. Might be something to explore.

 

Mostly just wanted to send some hugs. It is hard to get up the courage to start exploring a dx and then to feel unheard is so frustrating. I hope your psych-ed leads to some answers.

[Marie131]

Thanks for the encouragement.  I spoke w/ the psychologist who is doing the psych-ed and she said she will definitely redo the ASD assessment if she feels it's necessary.  I am sending in more documentation from organizations who have seen my son in social settings and witnessed his quirky behavior.  He may behave alright one on one w/ the psychologist but he is not ok in a group of kids.  I hope we get better answers this next time.  Next appointment is coming up in June/July.

 

Our school is lodging a complaint regarding the way we were treated by the psychiatrist.  It seems they feel it's not cool to dismiss parent's concerns regarding their children's inept social behavior as a "lack of practice due to homeschooling"!!

[kbutton]

It's great you have the school in your corner, and hopefully things will be much better this time.

[Lecka]

Glad they are doing that!  No one should be treated that way, maybe it can keep it from happening in the future.  

[ms3mama]

Have you seen anyone who specializes in OCD? Our 15 year old daughter was recently diagnosed and is in a intensive outpatient program. I had no idea how it can manafest so differently and how common and misdiagnosed it is. I would recommend just reading up on it and see what you think.

[Marie131]

Another little update:  Things have been getting worse at my house, meltdowns are getting more frequent and more intense.  Behavior is getting more and more violent and my ds is becoming a threat to himself.  He had a very scary episode and people are starting to pay attention.  Our school has arranged for a behavior consultant for him who is devising us a safety plan and helping us w/ the more difficult behaviors.  I have also recently learned that he will be in the SE program at school which means that I will have an EA coming to my house to help w/ the teaching and he will also have funding.  The amount will depend on how his next ASD assessment goes.  If he gets ASD we will have all sorts of help, but even without ASD the diagnosis that he has now entitles him to help and I am very, very grateful for that.  His next assessment is next month and I am nervously anticipating it.  His BC says she doesn't see why he would not have an ASD diagnosis.  I guess we will see.

[Jennifer-72]

Well, I am glad to hear you will be getting some help, but not happy to hear of the circumstances surrounding getting that in place.

 

Hopefully things settle down for him. Not easy for anyone.

[kbutton]

Well, I am glad to hear you will be getting some help, but not happy to hear of the circumstances surrounding getting that in place.

 

Hopefully things settle down for him. Not easy for anyone.

 

Yes, I agree. :grouphug:

 

If it makes you feel any better at all, our psychologist said all her families have been strung out lately, and the families with ASD kiddos, especially so--she thinks maybe the transition (in our area) from very long winter to summer with no spring has been hard on everyone. I really hope things are looking up quite soon.

[Marie131]

Hi everyone (who has been following this), I have a final update.  We had a full assessment done and the evaluator had no doubt in her mind that my son has ASD even before she conducted the formal assessment.  We received our full diagnosis, which is HFA, ADHD-combined type (and I do believe she said it is severe) and a LD of written output.

 

The psycho-ed evaluation was very informative and even though I don't yet have the full written report, his cognition ranges in some areas from superior (picture concepts) to very poor (2nd percentile for working memory, social reasoning and practical reasoning).  He is very splintered which, for those of us who live with him, makes SO much sense.

 

I am very pleased to have this behind us.  I am looking forward to setting up a plan for him and moving forward.  Now we wait on our next son who is beginning this whole process next month!

[Jennifer-72]

Oh I am glad to hear you were able to get some help! Hope the full report proves even more helpful and that the process goes smoothly from here on out for both your boys and your family.

 

My son has the same dx as your son. I can relate to the whole splinter thing. That langauge has been applied by everybody that has worked with him since he was 2!

[PeterPan]

I'm glad to hear your efforts have finally gotten you answers!  Hurray for persevering!!!  Well it sounds like in the meantime they've already stepped in, offering you more services and helps.  Hopefully this gives you access to even more.  That's wonderful.

[kbutton]

I am so glad you received a good evaluation, and here are some wishes that it will go smoothly with your other child.