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#1 of 41 Old 03-04-2012, 10:06 PM - Thread Starter
 
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Hi all :)

I wrote in here late last year about concerns that my DS (just over 3) might be on the spectrum. We had booked him in for an assessment in early Feb, but I changed my mind and cancelled the appointment. I've since rebooked the assessment for late this month.

Until recently, I had only spoken to a few people about my concerns. Part of the reason I cancelled the last appointment, was because all but two people (DH and a very close friend) thought I was completely overreacting. That he is just shy and needs time to adjust. "That I just need to learn to handle him better"
But now I'm back to feeling that it's not just that. DH (self diagnosed Aspie) is now pushing to get DS assessed too. He feels the constant struggles we have had parenting DS have been a large contributing factor to our separation. We get absolutely no time together, and going out with DS is such a stressful event (mostly for DS and DH), so we don't go out together as a family at all. He also doesn't want DS to grow up feeling as though there is something 'wrong' with him, like DH did. That knowing, and being able to help him learn about why he feels the way he does, would be a great benefit to him.

I feel it would be really helpful to have a better idea about what is causing DS so much stress. It would help me be more understanding. A label could help me in finding new strategies to help DS, when I'm out of ideas (because what everyone else does, doesn't work for DS). And an assesment would stop all the uncertainty I feel all the time.

Anyway! I am going to get the assessment done. But I want to be as informed as I can, and go into this somewhat prepared. So, I thought I could come here and voice the things that concern me, and sway my opinion on what's going on with him, either way.

 

The stuff that actually is a problem for him/us

Social anxiety. This is the biggest problem for us. He gets extremely stressed when we go out, and there are many people around. He will not play with other children at the playground. Cannot share a peice of playground equipment (he;s on the seesaw, and gets extrememly upset if another child tries to get onto the other side).

 

He's totally unresponsive if other children or adults talk to him or try to engage him in something. Or he gets very upset (this can vary from turning away and burying his head in my lap, to screaming and crying) Most recently, today while at the park (with a close friend whom we see almost every day, and often multiple times a day) offered him a piece of fruit he was indicating he wanted. He lost it. Hysterical crying and screaming :(
He has done this since he was very young, unable to be held my friends or family members at all. Our friends learned not to look at or smile at him.
But! He has and does choose to engage with people sometimes. He is playing with the trucks/trains pulling trailors, and will say "Look x, trains pulling a trailor"
Since we moved next door to another family, he has on a few occasions now, chosen to engage with the father, talking to him while he fixes something etc. But still wont respond when the father says hello to him in the morning etc.

 

He's very dependent on me. Spending most of his time, when we're out, on me. He likes to pull me around with him. Often refuses to do anything if I don't stand right by him. This is very hard on me when I also have DS2 (1yr) as well. Who is very social and into everything.

 

He is very anxious. If he plays in the backyard, and I'm in the kitchen (leading on to the yard), the door cannot be closed (which is difficult when we have a baby who is constantly playing with the door)
Most of the time refuses to go to the toilet without me accompanying him (he doesnt always do this, and is sometimes perfectly happy to go alone without any assistance)

He's been through stages of being terrified of the fireplace (unused), the smoke alarm, the door (waking in the night hysterical and screaming "Door!)

His tantrums/meltdowns and very frequent and, in my opinion, excessive. He has tantrums, when he doesn't get him way, but he also often just 'melts down' seemingly just losing control. Gets hysterical. Crying, screaming. Giving him what he wants never works for this. Any sort of discipline or distraction usually just makes it worse. Usually I have to wait it out. And heavy, rhythmic patting on his back helps a lot. I've also had success a few times reciting scenes from his favourite DVD (Thomas the Tank Engine)

 

And sleep problems. This isn't a big issue at the moment, because I have gotten used to it. But he cannot sleep with 20-30 mins of heavy rhythmic patting. And needs to spend much of the night sleeping on me.


Then he also has many behaviours, that aren't problematic to us, but are common with kids on the spectrum

 

He's very repetitive. Using the same phrases over and over. But his language seems to be developing fine otherwise.
He has a lot of 'stimming' behaviour. A lot are vocal. Humming, hissing, singing (babbling), lalalalalala, tickrrtickrtickr. rolling him tongue, moving his tongue up and down (inside his mouth) really quickly. Random yelling/screeching. 'Heavy' blinking. Lying on the floor moving his trains back and forth, over and over. Licking/Mouthing his toys (used to do this to me/furniture).
Never liked cuddling, (although he does now on his own accord) but needing to be constantly held.

He's very tense and rigid, but also 'floppy'. When he gets upset, he just 'flops'. Often rolling his eyes back also.
LOVES water play, but can't stand having drops of water on his clothes. Wouldn't bathe or shower for over a year.
Would not wear shoes for well over a year, but is now able to when the ground is to hot etc (since we started GF diet)
He's obsessed with transportation of all sorts, but loves trailors in particular. Always talking about trailors going on the back.

He does imaginative play, but it solely consists of trains/trailors/cranes (his obsessions)
Always been obsessed with lights and things that spin (washing machines/fans etc)

Apart from a few stages where he was often accidently walking into walls etc, he has very good gross and fine motor skills.

Toewalking (no longer does this)

He used to bang his head/pull his hair during meltdowns.

We had months of refusing to wear anything but long sleeves/pants/hats, even when really hot)

He has obvious sensory issues that have come and gone (freaking out over sounds we can barely hear, hating dirt of his hands, becoming hysterical when he gets an itch)

He only very recently started saying goodbye (still doesn't say hello)

 

This may sound a little odd, but (alike to his Dad, actually) he often comes across to me as 'robotic'. I find it really hard to explain why I feel this way.

My list could go on, but I don't have time at the moment.

I guess what I'm conflicted about is that he does play with kids, make eye contact, talk to people. But it's only on his terms. And his response when anyone tries to engage with him is so extreme. He's lovely and helpful, but it just looks as though he's just blankly mirroring us.

Does anyone have a child who is similar? Does anyone have thoughts on what we may be looking at?

 

Will I 'create' problems by focusing on them? Are the things I think are 'issues' not enough to warrant an assessment, and label?
 

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#2 of 41 Old 03-05-2012, 05:15 AM
 
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Sounds like he is probably on the spectrum to me.  Go ahead with the evaluation. 


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#3 of 41 Old 03-05-2012, 08:12 AM
 
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Originally Posted by Eloisa View Post

My list could go on, but I don't have time at the moment.

I guess what I'm conflicted about is that he does play with kids, make eye contact, talk to people. But it's only on his terms. And his response when anyone tries to engage with him is so extreme. He's lovely and helpful, but it just looks as though he's just blankly mirroring us.

Does anyone have a child who is similar? Does anyone have thoughts on what we may be looking at?

 

Will I 'create' problems by focusing on them? Are the things I think are 'issues' not enough to warrant an assessment, and label?
 

 

e·val·u·ate[ih-val-yoo-eyt]

verb (used with object), -at·ed, -at·ing.

1. to determine or set the value  or amount of; appraise: to evaluate property.

2. to judge or determine the significance, worth, or quality of

 

The point of an evaluation is to determine the significance of what you have observed; even if your friend or dh is a developmental specialist (which seems not to be the case) I would still look for an outside opinion until your concerns are satisfied. It's not as if a developmental evaluation involves X-rays, surgery, or anything invasive or permanent.

 

No matter how close that friend is she will not have to live with the outcome of not getting an evaluation for your child. Something is a problem when it interferes with daily life and A LOT of fathers will say that the problems are due to the mother not "handling" the child well. It is very common for fathers to insist that mom is overreacting, imagining things, or that the problems are due to her parenting; so mom backs down while carrying the nagging feeling that something isn't right.

 


"It should be a rule in all prophylactic work that no harm should ever be unnecessarily inflicted on a healthy person (Sir Graham Wilson, The Hazards of Immunization, 1967)."
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#4 of 41 Old 03-05-2012, 12:42 PM
 
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Our son's evaluation was a month ago.  Life is _so_ much better since the evaluation.  I waited until he was seven, because I also second-guessed myself (and listened to others who said he was just shy/slow with language/ a picky eater/ a kid who liked his routines).  The people closest to me at this point were all supportive, because anyone who spends enough time around ds realizes that his Aspergers definitely affects the way he interacts with the world.

 

At 7, my son already knew he was "different," and having an explanation of why has been extremely empowering to him.  How wonderful for your son that he can grow up with this explanation.  I told my son "you're not sick, there's nothing wrong with you, your brain just works differently than some other people's.  We're making a plan to help with things that bother you."  We've just started a brushing routine through occupational therapy, and so far he says "I don't like it, but I don't hate it."  He understands the purpose is to help him so touch doesn't bother him so much.  He loves the OT setting, it's like another climbing gym.

 

My son loves touch from me, done just so, on his own terms and time schedule, but doesn't really like anyone else touching him.  He engages people when he feels like it, but won't respond if anyone else tries to start a conversation with him, even if it's something they think he'd be interested in.  Doesn't say hi back to people, gets upset if strangers or even people he sees regularly but aren't "inner circle" try to say hi to him.  Loves to play characters with himself, but usually won't accept play ideas from anyone else.  He sounds a lot like your son.

 

Go ahead and get the evaluation.  Bring up your second-guessing of yourself too- it was helpful for me to understand that my son didn't have to check off every single box 100% of the time to still have Aspergers and still be hugely impacted by it.

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#5 of 41 Old 03-05-2012, 02:15 PM
 
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I think, rather than view it as an "autism assessment" you should maybe think of it as a general evaluation because there are many, many things that could be going on and a GOOD eval from the right person can help you figure out what is happening.  I'm not sure who you are planning to see but I would highly recommend a respected developmental pediatrician who can see him over multiple visits.  It can be prohibitively expensive but we wasted money and time going to a variety of people who couldn't really give us a good sense of our son's issues (an OT, a Speech Therapist, a child psychologist, etc).  As a total layman, your son does have a lot of spectrum behaviors but also a lot of things that suggest something else could be going on (sensory issues, language processing issues, etc) so a good eval is absolutely the best thing you can do for you and him! 

 

 

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#6 of 41 Old 03-05-2012, 02:52 PM
 
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I realized I didn't answer your second question about any kids like yours.  Just to give you a sense of where I am coming from - our son had quite a few red flags for autism (toe walking, sensory issues, wasn't talking, didn't respond to his name, bad eye contact, some hand flapping) BUT he was very social in that he always wanted to engage people to play with him, he loves to cuddle, he has great pretend play, etc.  He grew out of his sensory stuff by about 2.5 but still wasn't engaging much and only had about 5 words when we started the eval process.  Everyone we saw was confused by his mix of symptoms that seemed "autistic-like" coupled with other behaviors that didn't fit the spectrum at all.

 

Finally we went to a dev ped who diagnosed him with Mixed Expressive Receptive Language Disorder which means basically he just didn't understand almost all of what was said to him.  This is what caused the lasting "autism-like behavior."  For example, poor eye contact makes sense for kids who can't understand what is being said to them. Not responding to his name was because he just couldn't process the syllables that make up his name so he didn't recognize it as his.  His social skills were behind because much of social learning is tied to language.  The reason I advocate for a GOOD eval is because there were a few people who seemed willing to overlook the confusing issues and label him as on the spectrum.  Those people advocated intensive ABA therapy but we know now that what he really needed was intensive communication therapy.  ABA would have been a disaster for DS but with the introduction of signing and some electronic communication he is a different child.  All of his confusing behaviors have gone away and, as his receptive language improves, he seems more and more "neuro-typical" other than his lack of verbal speech.

 

He definitely has major challenges but with the right evaluation I fee like we are now able to make sure we are helping him in the right way.  So I am a huge advocate for getting an evaluation from the right person. You are struggling and it sounds like your DS is struggling as well.  No matter what label they assign, the most important thing you can get is a roadmap to helping him and your family the best way possible. 

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#7 of 41 Old 03-05-2012, 05:22 PM
 
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Quote:
Originally Posted by Emmeline II View Post

No matter how close that friend is she will not have to live with the outcome of not getting an evaluation for your child. Something is a problem when it interferes with daily life and A LOT of fathers will say that the problems are due to the mother not "handling" the child well. It is very common for fathers to insist that mom is overreacting, imagining things, or that the problems are due to her parenting; so mom backs down while carrying the nagging feeling that something isn't right.

 


yes.

 

I think that sometimes others have played down what is going on with my DD in an attempt to be "polite."  Some people see attempting to assure a mother that their child is "normal"  is kinder than admitting that there may be something significant going on with a child.  This is really, really, really not a reason to skip getting an eval.

 

The members of my family of origin were the worst about this -- they did not want to admit that they had a special needs child in the family. So instead of just facing reality, they found it easier to blame my parenting choices. "There's nothing wrong with HER, you are just too...." (fill in the blank, they found lots of ways to finish that sentence).

 

And no one has to face the consequences of this choice the same way that your child and you do. For my DD, getting an eval was the first step in figuring out how to make life work for her. She is on the spectrum, and she is currently THRIVING.

 

Without her eval, she wouldn't have had the accommodations, therapies, etc that have helped her reach her potential. She and I would still be floundering around in the dark. And refusing to admit to one's self and one's child that there is a label for the ways in which they are different doesn't hide the fact that they are different from the child. Kids figure that out.  Being honest with ourselves is the first step to eventually being able to discuss and explain this to our kids.

 

From reading your post, its time to get experts involved. You don't have to figure all this out first. You just have to realize when it's time to get the experts.


but everything has pros and cons  shrug.gif

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#8 of 41 Old 03-05-2012, 07:19 PM
 
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Your guy sounds a lot like mine did at four, which is when we started having concerns about him -- especially the uncertainty because he had some very spectrumy features and lots of very typical behavior, too. We, too, had many, many people who said there wasn't anything going on with him. An evaluation (which diagnosed Aspergers) was a wonderful thing for all of us.

 

In agreement with everyone who says go for it. Especially if you have a strong recommendation for someone good to do the eval. That person should be able to shift through and figure out what and what and where to go from here. It can be such a relief!

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#9 of 41 Old 03-05-2012, 08:09 PM
 
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Will an evaluation change who your son is?

Will an evaluation help you parent your son more effectively?

 

Remember, an evaluation is just that -- figuring out where he is.  Ds' response when overstimulated was to freeze, but some of the behaviors you describe sound very familiar to me indeed. We had ds assessed twice -- once for sensory stuff and once for anxiety/autism. I'm glad we had him assessed. It gave me peace of mind, and some strategies for working with him. (He turns out not to be on the autism spectrum, but close enough that some strategies for kids on the spectrum work with him.) When you're spending a lot of time worrying and when things that work with most children really don't work with your child, then I think it's time to have him assessed.


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#10 of 41 Old 03-05-2012, 08:17 PM - Thread Starter
 
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Thank you, all, for your kind replies. I really do agree. I will take him in for the assessment (we are going to see a Developmental Pediatrition recommended by our OT and a few other mums I've met who used him).
 

I think I'm just stuggling with that internal war, that this is all on me and I desperately want to make the right decision. DH and I seperated last month, so the added guilt that comes with that, is just adding to the pressure.

 

I hope the assessment gives us some answers. It's so hard when everyone has conflicting ideas about what's going on for him. And so stressful when people imply that I just need to 'do' things differently.

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#11 of 41 Old 03-06-2012, 10:48 PM
 
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I felt very similarly conflicted about getting dd tested.  It felt somehow like I was throwing her under the bus, like I was saying she was broken or something.  And, most people told me I was over reacting as well.  As it turns out, she is not on the spectrum, but the psychiatrist said she could see why I was concerned and agreed that testing was a good idea.  They were able to offer some ideas about where her odd behavior came from and what we could do about some of it.  Also, it made it easier for me to narrow down what is going on with her and get help for her in other ways.  If he is on the spectrum early diagnosis can mean all sorts of good things, including better funding and program availability, and it might mean you can get him on waiting lists early etc.  Evaluate with a clear concience mama!  It sure sounds like something worth checking out is going on, and figuring out what can only help. 

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#12 of 41 Old 03-07-2012, 06:01 PM
 
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I felt really conflicted about getting DS tested.  I kept denying, thinking the problems were all on me.  That *I* wasn't doing things right/well enough/whatever.  The ped didn't pick up on anything.  My DH didn't pick up on it.  I had 1 friend who said to me "that is not normal behavior", and it was enough for me to start the process.  I made the call that day.  I had no idea what I was going to learn, and I did not expect ASD at all, but that's what I got.  It took months to get all the way through the assessment process, but ultimately I got some answers, and some help.  And when I got the answer that he is ASD, I felt such relief.  Relief that I wasn't a horrible mother.  Relief that the tantrums and the screaming and the lack of socialness weren't *my* fault.  It's only been a few months since our dx, and only about 6 weeks of therapy, but I can actually have a positive outlook now.  If nothing else, I have people I can talk to about what's going on without fearing being judged for needing "help" from outside sources. 

 

It does make it more difficult to interact with mothers with NT children, because many of them don't understand.  And maybe it's sometimes just in my head that they're judging.  You learn to keep the ones that you know aren't judging and just keep the rest at arm's length. 

 

But I did want to say that the pp is right - it's not up to you to figure out what is applicable behavior.  At each one of our assessments the assessor went down a long questionnaire.  I had a list of every single behavior that I thought was an issue, and I'll tell you it was a MUCH shorter list than you have.  I gave them every single one of them.  It's their job, that's what they're trained for and paid for, to decide what is applicable and what is not. 

 

But with the list of behaviors you gave, something is definitely going on. 

 

HTH


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#13 of 41 Old 03-14-2012, 08:30 PM
 
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Wrapping your head around the idea of getting your child evaluated can be a really hard process. I can tell you it has been immensely helpful to have a diagnosis.

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#14 of 41 Old 03-15-2012, 04:22 AM - Thread Starter
 
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The first assesment appointment is next week and I'm starting to feel nervous! The other night I dreamt about going in for the appointment, and being laughed at :( It's a bit of a fear of mine that I'm making a big deal out of nothing, and just have to learn to parent 'better' As my father tells me :/

I'm also a little worried about getting a correct diagnosis. We are seeing a developmental ped, child psych and speech path. I'm just nervous because there is a lot of conflicting ideas about what 'is' Aspergers, Autism etc. Language is a big one for me atm. DS talks a lot, but is very repetitive. He tends to repeat the same phrases over and over. For example, we go on the swings and he will say "Up in the sky. Up in the sky" Every time. Rather than "I want to go higher, up in the sky, more, again etc.

Or he will do what I think is imaginative play, and say "I've lost my wallet. Need to go find it" But it's always the same phrase, and it turns out it's a phrase that is used in one of the Bob The Builder episodes he watches.
 

I know. I just need to wait and talk to the experts. I just want to be as well informed as possible. I want to tell them everything relavent, to make sure we get an accurate diagnosis. They only see him for an hour or so each, so they will only see so much!

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#15 of 41 Old 03-15-2012, 12:49 PM
 
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Originally Posted by Eloisa View Post


I'm also a little worried about getting a correct diagnosis. We are seeing a developmental ped, child psych and speech path. I'm just nervous because there is a lot of conflicting ideas about what 'is' Aspergers, Autism etc.


Don't get hung up on a "correct" diagnosis right now.  At 3, your LO is too young to be able to determine the difference between ASD and Aspergers or any number of other more specific diagnoses.  That comes later, I was told somewhere after 5.  Right now you need confirmation that this is not "normal" behavior, and a blanket diagnosis (like ASD) will give you access to resources you need, and help you on the path to getting more specific answers later as your LO gets older.  It will also help you in your "battles" with other people blaming you for his behavior - it's not going to stop the judgment of the random person at the grocery store when he's throwing a tantrum, but hopefully it will help with your friends and family to be a little bit more accepting. 

 

I will warn you though that for us the appt with the dev ped and dev psych (one appt with the 2 of them) was only the first of many on the road to diagnosis.  All that appt accomplished for us was more questions, since they were merely assessing where his abilities and behavior fell within the range, and making recommendations based on that.  They recommended an autism assessment, along with an OT and a ST assessment for us.  The ASD assessment was actually our very last one, when we got the answers to all the others.  All of the others just pointed out where the problems were, they didn't actually give us any answers. 

 

HTH


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#16 of 41 Old 04-15-2012, 12:37 AM - Thread Starter
 
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So, to continue discussing my conflicted feelings about all of this. I've seen a Pediatritian and a Psych. The Ped seemed to think I was a bit nuts, and was convinced DS was 'no where even near the spectrum' using his own words. He refused to give me a referral to continue the ASD assesment.

The Psych, who I only saw alone (still waiting for the appointment where I bring DS), felt that the behaviours I am concerned about definitely warrant a full assessment. But, I did only see her alone. So it brings me back to thinking. Is it all in my head? Am I creating the idea of DS being on the spectrum, when in fact, he is not? Why on earth would I be doing that? It doesn't make sense.

I just don't know. His behaviour swings to much. Compare yesterday and today .Yesterday he spent most of the day building towers and putting blocks into loaders, not really chatting or anything, just playing near me, but doing his own thing. My Mum, Sister and her partner came over, and DS refused to look at them. Wouldn't really talk, instead grunting and pulling me around. Insisted I sit right beside him the whole time. Continually mouthing/licking his toys. He wouldn't actively avoid looking at them, or just simply ignore them if they tried to speak to him.

 

And yet today, my Dad is here. DS wasn't keen on talking to him or looking at him at first. But then Dad starts playing with the trains, and DS is totally interactive. Chatting, responding, asking questions, showing him things. Now they're outside making a little fire, and DS is running around, helping find sticks.

I just don't get it. It's such a huge contrast.

 

The other week, we were at the part and DS was trying to take coins from my purse. I only had 5c pieces, which I'm not comfortable with him having, so I refused to give them to him. He was a bit upset and very persistent, so a lovely woman I was chatting to, found a 50c piece in her purse and tried to give it to him. It was obvious he wouldn't take it, he buried his head, turned away, so I took him from her, and offered it to him. And he threw it in my face. I thought he wanted the coin.

I start to wonder whether this is all me. Am I doing something wrong? Why can he be so different at different times.

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#17 of 41 Old 04-15-2012, 12:55 PM
 
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A good Dr. would explain the criteria they use to evaluate a child and how your child did or did not meet the criteria. I've noticed that doctors who only evaluate for ASD seem to have more stringent criteria and tend to be quite dismissive of parents whose children don't meet that criteria. Perhaps you would get further stressing "developmental" concerns and not specifically ASD.


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#18 of 41 Old 04-15-2012, 02:21 PM
 
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I would never go through a regular ped for any referral. Autism is not their specialty. Seek out a developmental ped or that psych who wants to do a full assessment. You want answers, you're seeking answers. Go with your gut, mama.


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Quote:
Originally Posted by Emmeline II View Post

A good Dr. would explain the criteria they use to evaluate a child and how your child did or did not meet the criteria. I've noticed that doctors who only evaluate for ASD seem to have more stringent criteria and tend to be quite dismissive of parents whose children don't meet that criteria. Perhaps you would get further stressing "developmental" concerns and not specifically ASD.



I agree.  This thread and Emmeline II's comments reminded me of a TED episode I watched with Dr. Aditi Shankardass.  She mentioned 6 conditions that can be misdx if only behavioral evaluation is done because they can similar behaviors.    

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#20 of 41 Old 04-15-2012, 03:40 PM - Thread Starter
 
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Thanks mama, for your replies. I should have clarified better. The Ped was a Developmental Ped who had a special area of interest in Autism (with a son with classic Autism and Severe Learning Disability). So it was specifically for an ASD assessment.
He did very few things with DS. Nothing like the testing I've read about here. Just sat down with his for 5-10 mins, and did a few little things.
The reasons he told for, that DS was not on the spectrum, were that A. DS pointed to engage him in something B. DS searched for something the Ped had in his hand C. he made car noises while using the trains (here he specifically said "My son couldn't do this until he was 10) and D. he had not problem having generic trains on the same tracks as thomas trains.

Maybe all these things mean DS isn't on the spectrum. But I'm certain that making car noises while using trains, doesn't classify you as NT if all you do with the trains at 3 years old, is move them back and forth.
The engaging people in things by use of words, pointing, pulling etc is something that really makes me question if DS is on the spectrum. He can be very enagaging. But it's only when it's an area of specific interest.
So when the Ped tried to get him to show him where the body parts were on a doll, he wouldn't talk, point or anything, but as soon as they started with cars/trucks, DS happily got involved.

And with the car noises being classed as 'pretend play'. I thought it was not the absence of the ability to do those things, but the quality of it. He's a really bright kid. He picked up his Dad showing him the car noises pretty quick, but he doesn't create it. He doesn't make them talk. His Dad doesn't make train noises, so he doesn't make them himself. Is this making any sense?

I am going for a second opinion, on the Psychs recommendation. But we wont be in to see him until July. I just feel so isolated. As though I don't fit anywhere. I feel as though my friends/mothers group don't understand, but when I went to the ASD playgroup, I felt as though they thought I should be grateful that DS is verbal/toilet aware/makes car noises.

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#21 of 41 Old 04-15-2012, 06:22 PM
 
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Are you kidding??? Wow. Well, I know th DSM is changing their criteria for ASDs, and I think that this will mean that a lot of kids fall through the cracks. :(

Keep pushing. Sounds like this ped is an idiot.

My son pointed AND made eye contact BECAUSE I TAUGHT HIM. He also searched for stuff I hid. And he never had a fascination w/ Thomas trains. None of that means he isn't autistic. All of it means he's just himself. 

This dev ped sounds like he was putting his own personal experiences and expectations on your son (and potentially other clients). Bad. Find another one. Or go with that psych you'd mentioned.

Find a new ASD group. Trust your instincts. It sounds like there's definitely something going on. My son is verbal, too, but he & I are still aspies. You know? 


 

Quote:
Originally Posted by Eloisa View Post

Thanks mama, for your replies. I should have clarified better. The Ped was a Developmental Ped who had a special area of interest in Autism (with a son with classic Autism and Severe Learning Disability). So it was specifically for an ASD assessment.
He did very few things with DS. Nothing like the testing I've read about here. Just sat down with his for 5-10 mins, and did a few little things.
The reasons he told for, that DS was not on the spectrum, were that A. DS pointed to engage him in something B. DS searched for something the Ped had in his hand C. he made car noises while using the trains (here he specifically said "My son couldn't do this until he was 10) and D. he had not problem having generic trains on the same tracks as thomas trains.

Maybe all these things mean DS isn't on the spectrum. But I'm certain that making car noises while using trains, doesn't classify you as NT if all you do with the trains at 3 years old, is move them back and forth.
The engaging people in things by use of words, pointing, pulling etc is something that really makes me question if DS is on the spectrum. He can be very enagaging. But it's only when it's an area of specific interest.
So when the Ped tried to get him to show him where the body parts were on a doll, he wouldn't talk, point or anything, but as soon as they started with cars/trucks, DS happily got involved.

And with the car noises being classed as 'pretend play'. I thought it was not the absence of the ability to do those things, but the quality of it. He's a really bright kid. He picked up his Dad showing him the car noises pretty quick, but he doesn't create it. He doesn't make them talk. His Dad doesn't make train noises, so he doesn't make them himself. Is this making any sense?

I am going for a second opinion, on the Psychs recommendation. But we wont be in to see him until July. I just feel so isolated. As though I don't fit anywhere. I feel as though my friends/mothers group don't understand, but when I went to the ASD playgroup, I felt as though they thought I should be grateful that DS is verbal/toilet aware/makes car noises.



 


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#22 of 41 Old 04-15-2012, 06:31 PM
 
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Eloisa: It sounds like your ds has "autistic symptoms/tendencies" but technically not enough to qualify for a diagnosis of autism. Did you talk to Dev. Ped. about the possibility of PDD-NOS, or AS?


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#23 of 41 Old 04-15-2012, 07:06 PM
 
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So, based on a 10 minute interview and a comparison with his son (who sounds like he's very severely affected), the ped said he didn't have autism? Just because your son has autism doesn't make you an expert. The whole point of autism is that it is a spectrum. Your son has some tendencies that sound like the autism spectrum. Others that don't. That's why it takes a thorough assessment, together with reports from the parents and any other caregivers.

 

And remember that the whole point of an assessment is to assess. If he turns out not to be on the spectrum, then you'll know and you can put your mind at rest. If he does, then you can figure out what kind of help would benefit him the most.


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My son has seen so many docs. He is 9 now. Sometimes two doctors within the same field would say two different things. We have heard borderline autistic, sensory processing disorder, add, tourettes, dyspraxia/dysgraphia, speech delay, developmental delay...etc. I never put a label on him, because it seemed like it was always changing. I think he knows he had some areas where he needed help but he never really questioned me about it too much. I just told him I wanted him to be able to write so that he could keep up in school and school would be easier for him (we did OT for many years for fine/gross motor skills). My son has been delayed in many things. Sometimes he would catch up for a little while (like with speech) and then he would fall behind again. 

 

Some things started to develop about a year behind the other kids...some took much longer. For example, we were stuck on stair walking for years. We live in a two story house, and he couldn't figure out how to go down the stairs with alternating feet until he was about 7 or 8. It just finally clicked one day. We tried practicing over the years...I even made footprints and put them on the stairs...nothing.

 

The new thing he is stuck on is handwriting. He can now press hard enough to write and his letters are pretty decent looking but he often skips words, uses bad grammar, forgets capitalizations, etc. He speaks so eloquently, but there is a disconnect (processing and motor planning problems are common with dyspraxia). His thoughts never make it to the page...he just starts writing and rambling and not making sense. Oddly enough, he also doesn't put spaces between his words. His school is starting to give me a hard time about this. I am glad I have an IEP in place. The OT at school says he is very difficult to work with and he will blatantly not space his words. I told her he can't help it but she thinks he is doing it on purpose! 

 

 

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#25 of 41 Old 04-15-2012, 08:34 PM
 
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My daughter is like this. She has several markers, we even had her evaluated simply because her older bro is an aspie, but she doesn't have quite enough signs to dx aspie or pdd. She's just quirky. :) I call her borderline.


 

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Eloisa: It sounds like your ds has "autistic symptoms/tendencies" but technically not enough to qualify for a diagnosis of autism. Did you talk to Dev. Ped. about the possibility of PDD-NOS, or AS?



 


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#26 of 41 Old 04-16-2012, 06:02 AM - Thread Starter
 
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HR, I think you're on the money there about the Ped. I wont be going back to him, and I'm definitely seeking another opinion.
You know, with the huge amount of sensory stuff going on for DS, he didn't even give me a referral to see an OT.

Mittsy, I brought up AS and PDD, and the Ped just cut me off, saying DS is NOWHERE on the spectrum.

LynnS6, that's exacty what I want. Just a full assessment, so we know what's going on and can get some help. The problem is, the way it works here is that we first need a referral from the GP to the Ped (no problem), but then the Ped needs to believe DS is on the spectrum to give us a referral to finish the assessment with a ST and Psych. And the three of them all need to say that, yes, he is on the spectrum. So now we're just playing the waiting game again, waiting to see the next Ped.

I feel as though the appointment with the Ped wasn't very thorough though. How are they supposed to diagnose Autism so quickly? It was a 50 minute appointment, during which we talked for 30-40 mins, and then he played with DS for the rest.

Jmarroq, thank you for sharing your story. It sounds like you have a pretty special little guy there, and are doing beautifully with him.

I know DS is who is he is, whatever the label he has. It's just, at the moment he's a pretty stressed out little guy, and I'm a pretty stressed out Mum. I'm really struggling, and I could do with some support. My hope is that by going through the assessment process, if he is somewhere on the spectrum, we can get some help for him.


So, just a little rant from me. I currently live with my two boys, in a unit behind a family we're friends with. Today, while feeling confused and emotional, I chatted to the mother (my friend), while our boys played. I told her I was wondering whether it might be helpful to do some play therapy, or go and see the Psych with DS, because he is really anxious. And she basically just suggested (over and over, for various reasons) that is was all about how I parent DS. From not being assertive enough. To getting frustrated by his behaviour to often. To my asking people not to be baby focused with DS was he was little (because it made him cry!).
Sigh. I feel alone enough at the moment. I feel like I'm doing enough wrong. It feels like I'm just being thrown one thing after another. I didn't need that from her!

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#27 of 41 Old 04-16-2012, 08:55 AM
 
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Oh, sweetie, DO NOT take it personally. The neighbor is clueless. Don't bring it up with her. I learned that the hard way, unfortunately. :(

As for the ped, again, an hour long appointment PERIOD is way too short. When I had Max dx'd, he had 2 separate appointments that lasted over an hour EACH and then we had an appointment w/ the doc that lasted an hour because we had to go over the diagnosis. We were given a full assessment from the get-go. Is there some way you can complain to a higher authority about this dr? (Meh, I know that takes more energy out of you to deal with...)


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#28 of 41 Old 04-16-2012, 09:43 AM
 
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I'm not trying to downplay how helpful professionals like OTs and STs can be, but there are so many great books out there for parents with many of the same techniques that those professionals use. Maybe getting one or two and implementing some of the ideas while you're waiting to get in with the psych might boost your morale.

 

Before my son started therapies last year, I'm not sure what I thought the therapists were going to do, but I thought it was going to be something more complicated that what it really turned out to be. A lot of it is play based and easy to do at home. Again, I'm not saying professionals are worthless, but parents can play a huge role as well. Basically, just don't underestimate yourself.  smile.gif

 

It sounds like what you really need is some support for yourself. Maybe keep trying that ASD playgroup. It might just take a little while to click with some of the other parents.  Or check out some parent support groups. 

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#29 of 41 Old 04-16-2012, 12:33 PM
 
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Quote:
Originally Posted by Eloisa View Post

Maybe all these things mean DS isn't on the spectrum. But I'm certain that making car noises while using trains, doesn't classify you as NT if all you do with the trains at 3 years old, is move them back and forth.
The engaging people in things by use of words, pointing, pulling etc is something that really makes me question if DS is on the spectrum. He can be very enagaging. But it's only when it's an area of specific interest.
So when the Ped tried to get him to show him where the body parts were on a doll, he wouldn't talk, point or anything, but as soon as they started with cars/trucks, DS happily got involved.

And with the car noises being classed as 'pretend play'. I thought it was not the absence of the ability to do those things, but the quality of it. He's a really bright kid. He picked up his Dad showing him the car noises pretty quick, but he doesn't create it. He doesn't make them talk. His Dad doesn't make train noises, so he doesn't make them himself. Is this making any sense?

 

A 10 minute evaluation based on the doctor's own (apparently) classically autistic child is not a comprehensive evaluation. I haven't had a 3yo evaluated, though my ds' evaluation at 6yo 11mo lasted 3hrs; I can't imagine a preschooler's evaluation being simpler/shorter. My son didn't start pretend playing until his younger sister was old enough to show him how; even then he would usually try to tell her that the toys did not do what she was doing/saying ("that bear is not a baby, it is a toy bear"). I don't think he really "got it" until was around 6yo. Ds could also be engaging on his areas of interests, and during his evaluation he would constantly try to make the question fit his interests (legos, star wars, lego star wars, and Ben 10) or sometimes ignore the question and start talking about his interests again--though he didn't actually share his interests, he "imposed" them on you, and if you didn't want to hear about his interest then he wasn't interested in you. This evaluation placed Ds on the borderline of the spectrum; what put ds most on the spectrum side were his social skills deficits. He just had an eval through school which we will get the results of next week, and will be revisiting the DP that did the initial eval (which was done by a team of a DP, a speech language pathologist, a psychologist, and a social worker at a hospital clinic).

 

Quote:

Comprehensive diagnostic evaluation

The second stage of diagnosis must be thorough in order to find whether other conditions may be causing your child's symptoms. For more information, see the section: What are some other conditions that children with ASD may have?

 

A team that includes a psychologist, a neurologist, a psychiatrist, a speech therapist, or other professionals experienced in diagnosing ASD may do this evaluation. The evaluation may assess the child's cognitive level (thinking skills), language level, and adaptive behavior (age-appropriate skills needed to complete daily activities independently, for example eating, dressing, and toileting). 94wds http://www.nimh.nih.gov/health/publications/a-parents-guide-to-autism-spectrum-disorder/how-is-asd-diagnosed.shtml

 

Hmm...I just saw the post about the diagnostic process in your health system.

 

You could try making a bullet list of his specific behaviors under developmental categories, referencing the milestones list you typically get from your doctor, the sensory processing disorder checklist, the DSM-IV, and other descriptions of spectrum behaviors (particularly social reciprocity and pragmatics) and deviations from typical development for a child his age that you can find (without referencing any particular disorder) -- and give the second doctor that list.

 

Child Developmental Checklist

SPD Symptom Checklist For Infants And Toddlers - Sensory

 

PDD-NOS | Autism Speaks

 

Blog talking about PDD-NOS, Autism, and the changing diagnostic criteria & labels of ASDs:

http://crackingtheenigma.blogspot.com/2011/05/what-is-pdd-nos.html

 

 

Quote:
Children with ASD have deficits in social and communicative functioning, as well as restricted/repetitive interests. According to Gresham and Elliot (1984) “social skills are socially acceptable learned behaviors that enable a person to interact effectively with others and avoid socially unacceptable responses.” It is important to recognize that the word “learned” means that social skills can definitely be taught to individuals who do not automatically learn these skills (Cardon, 2011). Social skills are learned behaviors and typical developing children can learn these skills easily; however, children with social-pragmatic impairments typically require more prompting and instructions. 95wds

 

The bolded part above reminds me of what you said about your ds learning how to "play" with cars from your dh.

 

Glossary of DSM-IV Criteria Pervasive Developmental Disorders ...

 


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#30 of 41 Old 04-16-2012, 01:19 PM
 
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Another thing I will suggest is that there are many other kinds of special needs kids out there and if you don't feel like you fit in with the ASD playgroup I promise there are other playgroups out there.  They might not be as organized or as easy to find but could you find a more general special needs group?  It does sound to me like what you really need is some support.  I went through a very similar thing once we found out that DS isn't on the spectrum.  I felt out of place in ASD groups and out of place in groups of "typical" kids.  I finally met some moms through DS's special ed preschool and have been able to get support from them.  It has helped me so much. 

 

Also, ignore your neighbor.  She has NO idea what she is talking about.  Play based therapy will most likely help no matter what label your child has since it is child-lead and directly addressing their unique needs (rather than trying to solve diagnosis-based assumed problems if that makes sense). 

 

I will also agree with everyone that you should get a second opinion.  That Dr you saw was obviously only looking to rule out classical autism and what I think you really need is someone to look at what is actually going on and help you figure out what it is. 

 

Hugs to you - this process is so stressful and full of confusing information and bound to create intense emotions.  You are doing a great job advocating for your child and things will eventually all fall into place.

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