Paging all you special needs specialists... you know, the ones carrying the M.O.M. degrees :)

[SpottedFoxx]

I'm too close to this and I desperately need help.  First a little background.  My son is 7 years old.  He has a genetic deletion (16p11.2) which is known to cause autism.  When we first sought help, the developmental pediatrician said "has anyone discussed autism with you?"  She gave him the diagnosis of PDD-NOS.  Since that time, he has been on and off the spectrum at least 6 times.  Most times specialists will bring up autism when they first meet him and then back off it after about 20 minutes.  We have participated in a study for his deletion and they did comprehensive testing including the ADOS test.  When it was all said and done, he had the diagnosis we felt were appropriate - severe ADHD, severe SPD, apraxia of speech, CAPD and low tone.  Since the study, we also had him tested for tracking issues - while his tracking is perfect, his eyes cogwheel which is something they have never seen before outside of Parkinson's patients.

Okay - so here's my challenge right now.  My son is struggling terribly.  He's angry all the time over the slightest things.  They are having a hard time at school with him - he won't make eye contact.  He can't handle the lunch room as it's "too loud".  He's being defiant, he's refusing to play with other children opting to play alone.

Did we all miss something?  Is it possible he does belong on the spectrum?  Is there something else going on here that we're just missing?  He's dye free.  I'm wondering if trying the gluten free thing is worth trying.  Does this sound like gluten reactions?  Is there a way to test to him to see if he has a gluten intolerance or do we just have to bite the bullet and change his diet?  I feel so lost.

[Linda on the move]

Originally Posted by SpottedFoxx 

Okay - so here's my challenge right now.  My son is struggling terribly.  He's angry all the time over the slightest things.  They are having a hard time at school with him - he won't make eye contact.  He can't handle the lunch room as it's "too loud".  He's being defiant, he's refusing to play with other children opting to play alone.

My DD is on the spectrum and has pretty severe SPD as part of that. She's also old enough and high enough functioning to talk about what is going on with her. What you are describing with your son *could* be the SPD. The lunch room is a complete nightmare. Not only is it too loud, there are all sorts of weird smells. There is also tons of movement going on all the time. It's a mess.

Eye contact is overrated. My DD does better with it now (she's 16) but for her, it also relates to the total degree to which her sensory needs are being met. Same with defiance -- it's one of her ways of shutting down when she is overwhelmed. As far as other kids, how does it do with a play date with a nice kid in a space he is comfortable? Judging his ability to play with other in an environment like school, which pushes all his little sensory buttons, isn't fair to him. The situation is overwhelming, but it doesn't mean he can't connect with others.

here's an analogy -- most of us have some sensory things that annoy us. For me, bright lights and heavy metal music are more than I can handle. If I had to function in a world where there were strobe lights everywhere and Black Sabbath music playing, I'd be a mess. I'd be angry and unable to focus, and not interested in connecting with others. That's kind of what a lot of the outside world is like for our kids with sensory issues. It's just too much, and it gets to them. So they act out.

What accommodations does your son have for sensory issues at school? What do they do to help him calm down/reconnect? What have they tried?

[livinglife]

For what it's worth 7 and 8 are very challenging years for children with learning, sensory and developmental differences.  They were the MOST painful for my child and myself parenting him.

As far as missing something and him belonging on the spectrum...who knows.  Sometimes, I have heard, a PDD-NOS diagnosis cannot be determined fully until age 8.  If he has a very rough year this year it may be worth it to you to get him reevaluated....I know...yet again!  We had many neuropsych evaluations and I think when we have him retested in a year he'll get a new diagnosis.

When we took our son off gluten and dairy (casein is a very similar protein to digest...often kids who have trouble with gluten have the same trouble with dairy) within six months his severe sensory reactions evened out.  He used to be irritable, didn't like the lunchroom (he ate with a few friends in the learning center) would find it hard to tolerate frustration on the playground and when he was not understanding his work he'd lash out.

Within six months he could calmly manage the classroom environment, friendship and playground issues etc.  After a full year went by his sensory issues cleared a great deal.  He and I noticed a difference in his mood and self regulation, as well as his attention, within a few days!  I do think he still has sensory issues, but they are just MUCH less bothersome and more in the "normal range".

I think that his diet is a VERY big part of his growth and development and we consider it to probably be a life long diet.  That is a hard one for my son to swallow but he remembers how he used to feel and doesn't want to go back there.  There are soooo many substitutions for gluten and diary foods.  While they are more expensive, the difference it can make, in my mind, makes it well worth it and best of all, you don't feel like you are deprived of yummy things.

[deminc]

Originally Posted by SpottedFoxx 

 When it was all said and done, he had the diagnosis we felt were appropriate - severe ADHD, severe SPD, apraxia of speech, CAPD and low tone.  Since the study, we also had him tested for tracking issues - while his tracking is perfect, his eyes cogwheel which is something they have never seen before outside of Parkinson's patients.

Okay - so here's my challenge right now.  My son is struggling terribly.  He's angry all the time over the slightest things.  They are having a hard time at school with him - he won't make eye contact.  He can't handle the lunch room as it's "too loud".  He's being defiant, he's refusing to play with other children opting to play alone.

Did we all miss something?  Is it possible he does belong on the spectrum?  Is there something else going on here that we're just missing?  He's dye free.  I'm wondering if trying the gluten free thing is worth trying.  Does this sound like gluten reactions?  Is there a way to test to him to see if he has a gluten intolerance or do we just have to bite the bullet and change his diet?  I feel so lost.

I think the diagnoses you finally had are so much more helpful than if you are just told that he is on the spectrum. He has A LOT on his plate and little wonder if he is such a bundle of angst. Sounds like he is just trying to survive in there. I really won't hold it against him though i know how very trying it can be. Do you have a list of interventions that the teachers can look into? Like a quiet place he can go to when it all gets too much, seating him next to a quiet patient child, allowing him to eat elsewhere. Honestly to me these are small things that the school can do and should NOT be making a fuss over. If your OT has not given you a list of accommodations for school, ask for one with formal letterhead. It will give you leverage with the school and teachers.

Regarding diet - my take is it doesn't hurt to try. You just have to plan ahead and get all your supplies (and recipes) ready.

In my son's case, the missing piece of puzzle was Irlen syndrome and once we took care of that, everything else was MUCH better. But he had signs of vision difficulties since he entered preschool, so if your kid doesn't, it's probably not that for him.

You may also want to considerif he is missing valuable social cues because of his sensory and CAPD issues. When I realised that my son could not read facial cues because of his vision problems - and he was misinterpreting tones - we went through facial expressions and he took to analyzing eyebrows and facial colors to decipher moods. I also had to guide him on adjusting his volume because everything sounds very loud to him, and he would turn up hs volume to match what he hears. I had this strange situation when he complained about how noisy everyone was, and his teacher wondered why he was shouting.

U get the picture.

[SpottedFoxx]

Thank you all so much for replying.

His OT from school called me today.  We had a long talk which started with "what can I do to help you?" and I just started to cry and tell her I am so worried for my son.  She explained that yes, he's struggling and yes, this is going to be a very hard year for him.  That being said, he's got great support in place (which he does - amazing teachers and a one-on-one) and everyone is working hard to make things as comfortable as possible.  However, he has gone from a self-contained classroom to an inclusion classroom (10 kids & 5 adults to 20 kids 3 adults including his 1-2-1) and it's a huge adjustment.  She says she sees him shutting down a lot due to the sensory overload but she's working with his teacher and aid to recognize the signs in order to get to him before he shuts down.  She also said that he's probably holding everything back until he gets home and then letting loose on us.  So... on her recommendation.... tonight we are going to have a pillow fight when we get home to see if that helps him unleash some of his pent up emotions in a more constructive way.  I'm also going to talk to my husband about trying to go gluten free.

[fizgig]

I'm so sorry you are going through all this (and your little one as well!).  From what I have heard, that age really is the most difficult for kids with sensory issues.  I know for me (I had many sensory sensitivities as a child) my wost year was when I was 7.  I was in trouble all the time and remember just feeling so angry and frustrated.  By the time I was 9, somehow I had learned to regulate my sensory needs.  I could control myself about a million times better - and I attribute that to neurological development considering I got no therapy or help.

Regarding diet, I am a firm believer in - can't hurt to try.  Though I really think you need a control subject, usually husband or significant other, who doesn't know exactly when a trial is happening.  Go on the diet for 3 weeks, then off, and have the OTHER person (can be teachers, etc) keep a daily log of their experience with your little one.  I suggest this because sometimes the shifts can be subtle and I think its hard for us to evaluate clearly on our own.  Though for us, we finally had to get allergy testing done to figure out our DS's food issues.

Finally, regarding an ASD diagnosis - I hear you!  Our DS is only 3.5 but we went through a lot of questioning about that issue.  We have since concluded that he's not on the spectrum.  A big part of that was getting him evaluated by two experts who are specially trained to determine language disorders from ASD.  They both feel very strongly that other issues (especially ADHD, sensory and language delays) can look very, very much like ASD because they cause so many similar symptoms.  They turn to the traditional ASD criteria to help them - so, 1) is there obsessive behavior that interferes with "normal" activity (this includes stimming, severely restricted interests, etc) and 2) is there a severe communication delay (and this should include gesture, facial expression, emotional reciprocity, joint attention delays, just a expressive or receptive language isn't enough), and finally, is there a severe problem reading social cues.  Just parts of those aren't enough, the all need to be there and they need to be "severe."  

Obviously sensory issues and language delays can cause many of the same kinds of symptoms but things like eye contact and auditory sensitivity are NOT indicators of ASD.  They can be caused by ASD, but they are really just red flags and can in fact be caused by sensory or auditory processing problems as well.  For example, eye contact is also very low for kids with receptive language delays or hearing problems.  If you can't understand what is being said to you, it is normal to avert your eyes.  This is why people using those check lists on line to see if your child has ASD is so counter productive.  They look for red flags that can be caused by many, many other things. 

I know this is controversial, but after our own experience, I really believe that many kids diagnosed as being on the spectrum, aren't.  They might have a lot going on, but I don't think they are in fact spectrum kids.  Not that I think it matters much unless it is a non ASD kid in some crazy 40 hour a week strict ABA program or something that could be counter productive. 

As with them, in your case I guess I would ask - would an ASD diagnosis change anything you are doing?  If it would then I would go and get another evaluation.  If the answer is no, then I personally don't think labels are that useful.  Hope that helps at all! 

[Mittsy]

It sounds like the behaviors could be chalked up to the SPD to me. Have you considered putting him in therapy if he is having a hard time dealing with things right now?

[livinglife]

Finally, regarding an ASD diagnosis - I hear you!  Our DS is only 3.5 but we went through a lot of questioning about that issue.  We have since concluded that he's not on the spectrum.  A big part of that was getting him evaluated by two experts who are specially trained to determine language disorders from ASD.  They both feel very strongly that other issues (especially ADHD, sensory and language delays) can look very, very much like ASD because they cause so many similar symptoms.  They turn to the traditional ASD criteria to help them - so, 1) is there obsessive behavior that interferes with "normal" activity (this includes stimming, severely restricted interests, etc) and 2) is there a severe communication delay (and this should include gesture, facial expression, emotional reciprocity, joint attention delays, just a expressive or receptive language isn't enough), and finally, is there a severe problem reading social cues.  Just parts of those aren't enough, the all need to be there and they need to be "severe."  

Regarding the above, it sounds like the two experts that evaluated your child are working from and trained in the criteria that will be used in the new DSM, the manual of diagnosis, that will eliminate aspergers as diagnostic category as well as PDD-NOS.  It can be seen as excluding some children from an ASD diagnosis who before would have previously qualified for one.  The new manual's criteria won't take effect until this spring.

A PDD-NOS diagnosis in the past would have included children for example who do not have rigidity or obsessive interests and was a label used to capture children with "atypical" autism, those that meet a certain number of criteria but not all, usually the executive functioning problems, concrete thinking, and social pragmatic problems of those on the spectrum.

Now, such children will be seen to have a "language based" social pragmatic disorder in the future. 

The problem I see with this, is that even if you change the soup label it's still the same when you open the can.  I get quite concerned the effort used to screen children out of an ASD diagnosis doesn't change the soup in the can but leaves a whole group of children vulnerable to the whims of school districts who are not mandated to offer the same level of support to these children. 

The cynic in me says that redefining the "label" is an effort to get a handle on the costs to insurance, schools and communities to provide mandated supports to those with an ASD.   So, when people say, what does the label matter?  It is the door to services.  In Massachusetts where I live children with an ASD are entitled to receive insurance re-embursed speech and OT at the level of a medical condition.

I'm sorry if i've taken this to a different place Spotted Fox.  It sounds as if your school is very supportive of your child and you!  I would certainly try dietary changes.  I also used to check in with my child's learning center teacher when I was making changes to confirm that it was making a difference in the classroom.  I think that's a great idea to do.  Good Luck!

[fizgig]

Sorry Spottedfox, really don't want to hijack your thread, so say if this is not what you need to hear right now. 

Livinglife, I totally agree with you!  Though I actually do think its complicated since there can be very different types of therapy applied to kids depending on the "source" of their delays.  Which is why I do think that that accuracy matters.  For example, it is increasingly clear to us that our DS has a serious central auditory processing disorder.  He has no other qualifying criteria for asd, he's able to read emotional cues, he communicates well with gesture, and he has no repetitive behaviors - the only things he has really are all tied to his inability to understand language and tone of voice. 

When we still weren't sure what was up with DS, we put him in a special ed preschool that catered primarily to kids on the spectrum and was very behavioral in its approach.  Which for some children is a life-changing approach (ABA and such).  However, for kids not on the spectrum, it can often be too rigid and focused too heavily on creating external motivations rather than relying on inherent desire to please and social pressure.  For many of those kids, floortimey, child-led approaches tend to be better.  Anyway, we saw him backsliding because the wrong issues were being addressed.  For example, they spent a crazy amount of time trying to force him to make eye contact, which now we know was tied to the fact that people speaking to him sounds lie white noise.  So, forcing the eye contact actually made him socially withdraw.  Were as dramatically slowed speech and very short, simple words has increased his eye contact to the point where we see it was never an actual issue.   

Instead of behavioral therapy, what DS really needs (and we are seeing a big improvement since we began) is typical peer models and extensive, daily speech therapy.  Had we stuck with the school district, DS would have continued to be placed in a classroom geared toward kids on the spectrum since they use a lot of visual support (which he does need very badly).  It is a big problem for us that, since ASD is used often as a catch-all, there are no services for kids with other issues and funding is very heavily geared toward ASD services.  I don't want those services reduced, but it is a hard pill for me to swallow that they can offer us access to a huge program that is not at all going to help our DS but can't afford to offer us more than 30 min of speech therapy per week.

That said, I also agree that it it is very bad that insurance companies and school districts are using the ability to "weed out" kids from services by restricting the ASD label.  We are suffering from this right now since our insurance won't cover any of our therapy because our current dx (MERLD) isn't covered.  However, I don't necessarily think the long term answer is just to leave ASD as a big kind of catch-all category.  Instead, I would much prefer schools and companies be required to cover everyone who needs help rather then requiring specific labels.  Of course, until that magically happens, I definitely understand and support people who seek out PDD-NOS diagnoses (or want their child to keep their dx) because it really does help them get services.  Which I think is messed up!

[SpottedFoxx]

No need to apologize - this is all very interesting.

I actually had a doctor tell me that she's giving him the PDD-NOS diagnosis so that the school couldn't argue with giving him services.  However, the school already was giving him twice the services she recommended - LOL.  

I love the soup analogy - it's so true!

[Smithie]

A PDD-NOS diagnosis in the past would have included children for example who do not have rigidity or obsessive interests and was a label used to capture children with "atypical" autism, those that meet a certain number of criteria but not all, usually the executive functioning problems, concrete thinking, and social pragmatic problems of those on the spectrum.

Now, such children will be seen to have a "language based" social pragmatic disorder in the future. 

Oh, so THAT'S what my son has! A language-based social pragmatic disorder! Well, this changes everything! 

Oh, wait. No it doesn't. 

[livinglife]

Spotted Fox, you are incredibly lucky to have such a supportive school community for your son.  He is getting a very high level of services!  Smithie, you're a hoot. 
 

[Peony]

My oldest has dxs of SPD, severe dyslexia, and an anxiety disorder. I will just chime in and say 7-8 were VERY hard years for us. She is 9 now, almost 10, and while her problems still exist what has changed was her maturity and how she was able to handle all the intense feelings. I know we've "chatted" briefly in my past about my DS1 who is ASD, oddly enough while he has his whole other set of issues from DD1, she is a MUCH more intense child then he is. I still get the brunt of her anger, rages, and other behaviors because I am her safe zone. She can now manage to hold it together in public but the second any door clicks shut and she is with me, all hell breaks loose. She is safe and she lets it out. At age 7, no. I distinctly remember carrying her out of a place at age 7 with her kicking and screaming, in full meltdown mode, desperately trying to get 2 of my younger children out with me before DD1 managed to escape and run in front of a car. Those days are over but I wasn't entirely sure then if we were all going to survive! 

We took an opposite approach with DD1 in trying to have her have outlets to expend everything was bottled up inside. We ended up trying many, many  sports after school. For many different reasons. I know I've seen Linda talk about about swimming and her DD, we had the same experience. It was like OT for DD1, We ended up doing swim team for a while. Now DD1 has a list of sports she does that feels like it is a mile long. Honestly, most days, I think it is the only way we stay sane because she has those outlets. It isn't always the right thing for every child, but it has worked so well for DD1. I consider her sports, her therapies. 

[SpottedFoxx]

I know how lucky I am - I see the posts from around the country and see what other families have to do to get even the most basic services for their children and it breaks my heart.  Funny story - the head of human resources for our district is also an old friend of mine.  I recently engaged her in a sales call but spent the vast majority of the time telling her how wonderful her staff was - I almost forgot to tell her about what I was selling 

My son is an amazing swimmer but most "regular" teams are hesitant to take on a child with any needs.  We do have a team for special needs but that starts at 9.  In fact, the person in charge of that team saw my son swim this summer and told me "he's mine when he turns 9!"  So... I think I may be able to get him in a bit early (next year) but still.  We do therapeutic riding on Saturdays and that has been a huge hit.

[LoveChild421]

Haven't read all replies, but wanted to give you some info in case no one else posted similar.  My son has autism and we have found that the best thing for him is for him to not eat in the lunchroom but rather bring his lunch back to the classroom and eat.  We had this accomodation written into his IEP plan.  The best thing is to have the school do a FBA (functional behavior analysis) to determine what is setting him off and making a plan to not overload him from a sensory perspective.  My son's behavior improved so much when the school did one and they were able to identify specific sensory triggers for meltdowns and such.  There is usually an autism coordinator or specialist or even a school psychologist will be able to give you into on how to request a functional behavior analysis and behavior plan.