Sensory disorder?

[bethben]

I have written on the forums before about my 12 year old who I thought was depressed and too withdrawn.  He has no outside activities and really doesn't care about activities or making friends.  He was also starting to get quirky in behaviors.  He has started to be seen by a therapist because there are some behaviors we didn't know what to do about.  The therapist (45 years experience) is referring us to a physchologist/neuro type person to figure out if there is a sensory processing disorder with him - especially relating to other's and his own emotions.  He does have some sensory issues in that he hates certain type of clothing, but it's not all that restrictive.  It's not surprising to be going this way.  Ds behaves appropriately in public and is pretty easy to get along with but I can see that developing a close relationship with anyone could pose a problem in his future.  I feel like I still have to teach him how to relate to a person his own age.  I feel like a life coach with him sometimes.

 

Basically, what should I be looking for or asking?  

[wapiti]

What are the behaviors of concern?

[bethben]

All of these separately seem to be character issues but together the therapist seems to think something else is going on.

 

He is stealing time on the computer (up late into the night until we figured out what was going on) and food, lying about it and has no remorse nor does he seem to understand why we're upset about it.  

 

He has a lot of trouble with relationships and can't look people in the eye.  A new friend comes up to him in church to see if he wants to hang out in a different area of the church. Ds doesn't respond right away nor does he even look the friend in the eye.  It seems to take him a minute to figure out what to do about the request.  After the awkward moment I step in and suggest he goes with his friend and actually respond to his friend by answering his question.

 

When he talks to me, it's often in a stream of consciousness with few breaks to see if I'm understanding what he is saying.  He usually does this while he is pacing back and forth.  I will often grab his arm to keep him from pacing so that he can look at me while he talks.  One time, he talked while pacing in a circle around the table I was sitting at.

 

When the therapist saw him, there were a lot of tears from just trying to explain what he was feeling.  There seemed to be no way for him to communicate his true feelings.  Most of the time, if he wants something he'll just say, "bike" or "wrestle" which to him is enough to communicate that he wants to go for a bike ride or wrestle with dad..  We have to tell him to use a full sentences.  If he wants a hug, he'll just stand next to me.  He never hugs back and even when I bear hug him, he likes it, but shows no emotion with it.  

 

He tends to get along better with children 3-4 years younger than himself better than people his own age or older.

 

He likes to do activities when we make him, but never wants to go back even though he enjoyed them a lot at the time.  For example, he loved a computer camp he went to, but when asked if he wanted another one the following week, he wasn't interested.  

 

He describes his life as "scrambled" and "not having information needed to understand what is happening".  The therapist seems to think there is a breakdown of sorts with understanding nuance in communication and responding in kind.  

 

 

 

 

 

 

[PeterPan]

Have you ever suspected autism?

[bethben]

A little more now than in his past.  He's 12 now so a stent of a few months of depression had added to the list of concerns and got him his own therapist.  His oldest brother has severe physical and mental handicaps so I've been around autistic children for a long time.  I guess the difference is that the autistic children I know were on the severe side where it affected day to day life and routine.  Ds has never been close to that category.  He's a flexible child who does roll with changes (at least outwardly - I have no idea what's going on inside in his head).  Ds is more along the lines of a child who may have never gotten diagnosed and goes on to be an engineer with awkward relationships who loves his work.  Just like my dad.  My ds is much like my dad.  My dad went on to have a family and friends that were never really close and owned a business.  He wasn't the best businessman and got taken advantage of by poor employees, but we was somewhat successful.  My dad was awkward to be sure socially.  My ds reminds me of him all the time.  

 

But then, he has moments where he is completely enjoying the book we are reading right now.  It is full of verbal puns and nuances of language that are put in there to be humorous.  He laughs at the appropriate places and does get the dry humor of it.  

Edited September 19, 2017 by bethben

[bethben]

He went to speech therapy for 3 years and no one picked up on quirky.  He was just shy and introverted.  Only in the past 2-3 years have I noticed that his behavior is starting to get a little more strange - such as the pacing and the inability to grasp social situations.

[PeterPan]

How is he with writing?

 

A neuropsych is a really good way to go with this. I'll tell you though, the psychs we saw did *not* do the Social Language Development Test. It's commonly done by an SLP, and it could be really helpful to you. There's some other testing an SLP can do, like the Test of Narrative Language. You might even be able to find someone trained in doing the Dynamic Assessment   Socialthinking - Clinical Training

 

You might find this article interesting. Socialthinking - Articles  It acknowledges that social thinking deficits cross diagnostic (DSM) labels and that you have to work with the person where they are. 

 

If he's having physical sensory symptoms, I would encourage you to add in an OT eval as well. If you can find someone trained in testing and treating retained reflexes, you might find that helpful. You can also look on youtube for the tests and check for them yourself.

[bethben]

He can write well.  His writing is actually very good and he uses some nice descriptions that include some good vocabulary.  His handwriting is horrible.  

[Wheres Toto]

My 12 year old has Aspergers (or whatever they call it now) and Sensory Processing Disorder.  We've known for years, mainly because he was in Early Intervention for preschool where they noticed things in addition to his very obvious speech delay.  He sounds a LOT like your son.

 

Ds definitely has trouble socially, doesn't relate well to people, doesn't really seem to care about being social most of the time, prefers to stay at home (preferably on his computer or some other screen) even if he enjoys an activity, will talk non-stop even if you aren't responding/reacting/or showing any interest at all, he also paces when he does his "lectures", totally awful handwriting but a great imagination for telling stories, absolutely LOVES puns, hates being hugged but will tolerate it for a second if he's the one who initiated it.  He's definitely quirky (our favorite way to describe him), but he takes pride in his weirdness so isn't usually bothered by the differences.  He's fairly functional at this point but it's been years to get here.

[kbutton]

Your description screams autism to me. I highly recommends the TOPS test, but that one might be better when he ages to the adolescent version. If he's at the top of the age range for the test, he might compensate well enough to pass it. The adolescent version would have more room to test where he starts to struggle.

 

It sounds like you naturally adjust things for you son or naturally know what he seems to need. If you were not able to do this, his difficult areas might be more pronounced or more obviously autistic.

 

Or, he could just have some language issues coupled with anxiety.

 

But it sounds like autism should be on the list of possibilities.

[PeterPan]

But it sounds like autism should be on the list of possibilities.

 

It's undoubtedly why they're referring him to a good psych. It just might be out of that counselor to diagnose, so they are letting the parent come to it gently.

 

For the op, when people say autism, it's not saying severity or support level or anything. DSM4 and previously you had different types (aspergers, pdd-nos, classic autism, etc.). Now with DSM5 we have one label, autism, and support levels. So there's such a range that yes, it's entirely possible your ds will get a diagnosis of some kind.

 

We had an SLP run the TOPS (Test of Problem Solving) as part of that dynamic assessment. It's another very good one that will often show things in higher functioning and gifted kids and explain the quirks. And again, it's testing our $$$$$$$ neuropsych didn't bother to run. So a neuropsych gets you an official label, but it's SLPs who are doing the Social Thinking intervention and therefore the SLPs who do some of the most actionable testing for our kids.

 

If you find an SLP who specializes in autism or Social Thinking, they could run some of these tests for you. It would complement what the psych will do, and it's dramatically less expensive and easier to get into. Like a np might have a 3-6 month wait, where an SLP might be just a few weeks.

[bethben]

I figure I still have the same kid.  I have been wondering how he would get/maintain a job, deal with mean/ manipulative people, and even find a wife.  The diagnosis would just give words to what I see anyway.  And, it would help him work around his struggles.

[PeterPan]

Actually it would do more than that. There are a lot of REALLY GOOD interventions now, materials, therapists who specialize in teens and adults. Teens/adults are actually Michelle Garcia Winner's FAVORITE group to work with! So when you look at the Social Thinking links we gave you, that's who she's writing to. They also have materials for children now, yes. But your options are so good now for getting him materials that would make sense to him and help him connect dots and help him at least be intentional. 

 

And the use of Social Thinking materials crosses labels. No matter what label he gets, it sounds like he's going to benefit from some Social Thinking help. If you find the person you'd like to do Social Thinking materials with him, they might be able to do that testing or refer you to someone really good at it. 

[PeterPan]

This is just a total aside. For my ds, he fits a profile on the Social Thinking site (in that article I linked you to) where he could live independently but will need help to problem solve. It's just his profile, and it's really evident, even now. He just has issues with that and will need help. So I think where you think you're seeing things, you probably are. Some of the testing allowed us to quantify it.

[Pawz4me]

Bethben, your DS sounds a lot like my DS18. He had speech therapy (apraxia) and occupational therapy (for sensory issues) when he was a preschooler. I was 95 percent certain he was on the spectrum from the time he was three or so, but the professionals I bothered asking about it (not many) back then said no, he can't be. He makes pretty good eye contact. Umm . . . right. At the time it didn't seem worth pressing the issue. For the most part he got along fine and I didn't see that a diagnosis would make much difference.

 

Of course the thinking on what autism "looks" like (or can look like) has changed a lot in the past fifteen or so years.

 

DS got along pretty well until the tween/early teen years. After the toddler tantrum years he was a very easy kid to parent and live with (perhaps because DH and I are introverts and DS's personality meshed well with ours--I suspect more extroverted parents would have found him to be challenging). Around fourteen what had appeared to be "just" shyness and introverrsion also became a LOT of anxiety. The social expectations really ramp up during the tween/teen years and that can be so difficult for those on the spectrum. We ended up at a psychiatrist to help with his anxiety and after spending some time with him she told me "I think he's on the spectrum. In fact I'm sure he is." Which eventually led to a full psycho-educational evaluation and a diagnosis of ASD-1 (and highly/profoundly gifted in some areas).

 

Getting a diagnosis has been very beneficial for DS. Pretty much exactly what you said in your last post -- Knowing why he's the way he is helped reduce his stress level some (and anxiety medication has been absolutely wonderful for him), and I think to some extent the diagnosis has given him a sense of belonging. He's now away at a four year university and seems to be doing well academically (I don't know about socially--not surprisingly, that's much harder for me to get a handle on with him!). Will he be able to hold down a good job? I don't know. He certainly plans to, but I take things one step at a time with him. I like to hope that some day he'll marry, but he may not need that in order to be happy. And that's ultimately what I want for him--to be happy, however he defines that. It doesn't have to be my definition.