Does an asperger's or SPD diagnosis have to involve drugs?

[mom2happy]

This is kind of all over the place as I am also "all over the place" in my mind today.

Today I finally took DD to a pediatric neurologist for an evaluation. It was mostly questions and more appointments.

She was ALREADY talking about Zoloft. She said first we can try OT and speaking to a therapist for impulse control strategies, but she wants her to go to a psychiatrist for an evaluation also.

I am very concerned that the psychiatrist will be very quick to start drugs as a way of "troubleshooting".

I'm looking for experience with this beginning process of getting help for my almost 8 year old DD.

DD is smart, does well in school academically and in school with her friends (in a structured environment).

 She is unable to hold it together at home sometimes.

Her tantrums, rage, and impulse control when she is upset are similar to a 3-4 year old's behavior.

When every thing is the way she thinks it "should be", she is the most pleasant sweet person to be around, but when something doesn't go the right way- she flips.

She is inflexible, so rational ..... that she becomes irrational because of the fact that things are not black and white (hope that makes sense).

She is uncomfortable in a lot of social situations, the time it takes for her to be okay in some places is when the event is over. She is getting better with, but has had major problems with certain smells. Noises, loud places, high ceilings, too much stimulation bothers her.

She is extremely artistic and can spends hours on fine details and tiny drawings since she was 3. She has no problem being alone.

Play dates are not important to her. Just being in school is enough of a social life for her. She has a hard time with transitions and is inflexible about a lot of things.

Anyway, we go days where everything is great, but then we are back at the same place when she blows her stack and screams horrible things and feels this panicked rage when she feels an injustice has been done to her.

It seems like our newest addition to the family was a very hard transition for DD. It's taken almost a year for her to adjust to it and while things are getting better, I am worried about her being able to cope with life, the anger she feels, and the effect her outbursts will have on the other children.

I could keep going on. I guess I just needed to type this all out and see what anyone has to say.

[littlest birds]

I have heard of drugs being used but they have not been suggested to me, ever.  Our 11yo ds has Asperger's.  It is my understanding that sometimes ADD drugs are used (and sometimes also diagnosed alongside), or antidepressants for some, as there is a tendency toward depression.  If you are talking about behaviors that seem threatening or harmful then drugs are more likely to be brought up, since altering those behaviors becomes important. 

Otherwise, the main strategies are therapies and social skills teaching.  IME drugs aren't as much a part of it, partly because drugs don't make much difference at all with the core issues for either of these. 

[bonamarq]

Depression and anxiety are very common in teens with asperger's and can, for some, be a life saver -

what you describe to me (I work with, but do not diagnose, people on the spectrum doing what we call Family Focused Positive Behavior Support)

seems more like  SPD with mild asperger like traits??? - just because she prefers a limited social life and prefers to be alone does not mean she has aspergers

It turns to AS if she is UNABLE to read social situations and non-verbal communication and misses the unspoken rules that others seem to just pick up on

Is her language very concrete? Does she do very well with decoding but have trouble with comprehension (typical of AS kids)

In either event, drugs would not help with this - and drugs certainly have plenty of their own side effects that are no picnic either -

Depending on how much of her environment you can help her control, I don't think meds at this point are really called for?? If you would like to avoid them then stress that with your doctor - I think some docs get in a habit b/c 99% of the folks they come in contact with EXPECT immediate pharmacological relief! If you express your desire to avoid drugs unless absolutely necessary, than perhaps she'll work with you - if not than I would find another Dr?

Trying to maintain a consistent routine and preparing her for when there must be changes might help - giving her concrete and specific tools and strategies to help her deal with upsets may go a long way to minimizing melt downs.

[Rik-E]

She sounds much like my son.

OT has made a huge difference!  We are still working on emotional control, fight or flight, and outbursts. But since he has been in OT (about 16 months now) he has really improved with most areas, and improved some in others. Definately give OT a chance to work before trying drugs IMO. 

[Roar]

Short answer: There are many kids with SPD or AS who do not take medication. There are also many who do.

You are the parent, you make the call on treatment. I would keep in mind that just because they mention it as an option doesn't mean you have to do it. You may be willing to do stuff that some families won't. By that I mean you may have more energy to put into therapies or more willingness to tolerate stuff that other parents would want to medicate to fix.

If you don't think the psychiatrist would be helpful right now you are certainly within your rights to say that you aren't interested in medicating at this time and want to give other treatments a chance to work first.

[Linda on the move]

I have a 14 year old dd with Aspergers. who has never been on meeds.

A solid dx opens up so many options for interventions and therapies. Have you read the out of sync child yet? Have you worked on a sensory diet with her?

Cognitive behavioral therapy was great for my dd, as was a social skills class. She's much happier in an alternative school rather than a traditional school.

I would put my child on medication rather than watching them suffer, but there are so many other things to try first.

[QueenOfTheMeadow]

No. I don't think that it is always necessary. My ds is on the spectrum, and we ended up putting him on meds when he began to become violent. He's actually on intuniv, it was orignally used as a blood pressure medication and is now being used in ADHD, and with children with impulse control issues. But many children on the spectrum do not become violent or deal with such severe impulse control issues that it affects their life so extremely.

[lotusdebi]

My older son (high-functioning autism and sensory processing disorder) sees a DAN doctor and takes supplements - GABA, Magnesium, and Fish Oil. He also went casein-free and he takes digestive enzymes when he eats gluten. These, plus occupational therapy, a weighted vest, (and weighted blankets and melatonin for sleep) have resulted in tremendous changes. He also attended social skills classes on and off for a couple of years which helped. He passes for neurotypical now. He transitions much more easily, is less violent, has a higher frustration tolerance, and is able to actually sit still and focus for periods of time. He only loses control when we forget a pill, miss OT, or get lazy about casein.

There are different ways of approaching these diagnoses. You just may have to look around for a provider who is more in line with what you want to try. Good luck!

[QueenOfTheMeadow]

Originally Posted by lotusdebi 

My older son (high-functioning autism and sensory processing disorder) sees a DAN doctor and takes supplements - GABA, Magnesium, and Fish Oil. He also went casein-free and he takes digestive enzymes when he eats gluten. These, plus occupational therapy, a weighted vest, (and weighted blankets and melatonin for sleep) have resulted in tremendous changes. He also attended social skills classes on and off for a couple of years which helped. He passes for neurotypical now. He transitions much more easily, is less violent, has a higher frustration tolerance, and is able to actually sit still and focus for periods of time. He only loses control when we forget a pill, miss OT, or get lazy about casein.

There are different ways of approaching these diagnoses. You just may have to look around for a provider who is more in line with what you want to try. Good luck!

This stuff defninately helps with ds also. Unfortunately, as he got older, we needed a bit more help. He does all these things as well as medication. But we are also going through chelation, because he tested high in mercury and lead. He is also on seizure medication, and I wonder if this doesn't affect him as well. He's supposed to grow out of the seizures in the next few years! So maybe....

[mom2happy]

Originally Posted by Roar 

If you don't think the psychiatrist would be helpful right now you are certainly within your rights to say that you aren't interested in medicating at this time and want to give other treatments a chance to work first.

I don't see what point going to the psychiatirst would serve. Another diagnosis? I don't know. I think it would only be more stress for DD as we get the ball rolling on figuring out what she needs. Is there any reason I SHOULD go? We havent tried any type of therapy yet, so drugs are out for right now.

[mom2happy]

Originally Posted by Linda on the move 

I have a 14 year old dd with Aspergers. who has never been on meeds.

A solid dx opens up so many options for interventions and therapies. Have you read the out of sync child yet? Have you worked on a sensory diet with her?

Cognitive behavioral therapy was great for my dd, as was a social skills class. She's much happier in an alternative school rather than a traditional school.

I would put my child on medication rather than watching them suffer, but there are so many other things to try first.

Yes, there are so many things to try first. I have no intention of trying anything unless it became a LAST resort.

I did read the out of sync child along with several other books.

I've found a lot of helpful information about kids like her, but no matter what i come up with, I can't help her figure out how to deal, and cope with certain feelings.

So......... this means I have officially gotten the ball rolling to see what help there is that might work.

She is going to be 8 this month and I keep thinking she is going to outgrow certain things like she has others.

She still might, but in the mean time, I really think we need some help.

[Roar]

I would only go to the psychiatrist if either 1. you do not think you have an accurate diagnosis yet and you want a second opinion or 2. if you want try medication. If neither of those are true I would focus on other approaches first.

[Linda on the move]

Has she had a evaluation at all? Does she have a dx?

I got the feeling the OPer was try to avoid a sold dx out of fear that it would mean meds.

[mom2happy]

Originally Posted by Linda on the move 

Has she had a evaluation at all? Does she have a dx?

I got the feeling the OPer was try to avoid a sold dx out of fear that it would mean meds.

The neurologist gave a dx of sensory integration disorder, and told me DD has some aspergers symptoms.

She said the next step is melatonin, a psychiatrist, an evaluation for OT, and a therapist.

From the feedback I got here on another post, it doesn't sound like she needs melatonin. Since I'm not interested in trying any meds at this point, is there even a reason to go to a psychiatrist?

[CJNeeley]

I would say an Asperger's diagnosis doesn't have to mean meds. Also, depending on your insurance they will likely cover certain therapies better with a formal diagnosis of something that requires it... you can choose whether or not you take her, and you can also take her without fear you'll have to medicate (in fact, even if she has something that's possible  to medicate and the doctor recommends it as an option, you can choose not to do the meds and try other options first).  So I'd say it depends on if you have access to the treatments she needs without a diagnosis, if you need a diagnosis to access care in your area then I would take her so she can get into the programs that can help her. Please keep in mind though that a psychiatrist isn't just someone with a prescription pad, he is sometimes a necessary step for screening/diagnosis of things that he will then refer out for treatment/management. A diagnosis isn't a bad thing really, but if you fear labelling your child and can access enough care/treatment for her without one then I guess what does it hurt to wait?

Another reason the doctor may have recommended it as the next step is because it might take some time to get in as a new patient at the psychiatrist's office (especially without emergency symptoms like those regarding harm to self/others). I know with our last insurance the only psychs covered by them that were accepting new patients had 8 mo or long waiting list for new patients who weren't either actively attempting suidical or  cutting behaviors or first admitted via emergency room for psych related issues... I'm sure it's not always that bad but sometimes that's a factor, so if he knows the area or the insurance company to be a problem it could be the idea of getting the ball rolling and things in motion "in case" because sometimes it's easier to just cancel the appointment if improvement happens before then than it is to get in quickly after another avenue has failed. (We personally feel we actually got lucky and were able to get in faster and with the doctor our ped had wanted to work with once Hubs switched jobs/insurance because he was covered under the new plan and he squeezed us in faster than perhaps he normally would have because the ped's office called ahead and mentioned the previous insurance snags that stalled care earlier... but it scares me to think about what could have happened had God not blessed us with the job change, because he was threatening detailed self harm and trying to run away--we had to get the bus driver and a fellow mom friend involved in the 'run away prevention plan' which might have been draining if it had been an extended time frame.)

Don't let  anyone bully you into doing something you don't feel is right or helpful for your child, but please don't let your fear hold you back either. Try to really reflect on everything going on with your daughter--and everything her doctors have said/recommended--in a moment of calm and quiet, and then trust your gut instincts on what feels like the next right step. We could all weigh in with opinions but ultimately we don't really know your daughter, but you do and I believe you'll probably know exactly what you feel you should do if you just quiet all the external enough to listen to the internal I think you'll find your just right answer for right now... :)

[Ili's Mama]

Sensory integration therapy can be a Godsend for kids with Sensory Processing Disorder.  My DD changed a lot of her behaviors after beginning a sensory program with her OT, and she's improved in every way since we've begun a sensory diet at home.  We're starting school-based therapy too, which addresses issues that relate to school (ask about it, even if you homeschool!  Public schools do a lot to work with hs families).  I've mentioned that I don't want her on meds--which school therapists can't prescribe or even recommend--and they've all reassured me that she'll probably be successful in school, with her sensory diet.  Also, if your DS does go to a public school, ask about an IEP if you haven't already.  It doesn't have to mean pull-out special ed unless YOU want it to.  But kids can get lots of sensory activities/support during the day and not be as likely to need meds.

[Peony]

My 8y DD1 has SPD, anxiety, and is dyslexic, she certainly has some asperger's traits but that has never been dxed. We only medicated her once for a short period of time when she was getting to be a danger to herself. Once she got over the hump so to speak, we were able to stop, and that was 2 years ago and she has done well with just the many therapies we do with her. OT with a therapist specializing SPD was a lifesaver for us, we had minimal resources locally so we actually traveled to a SPD clinic for intensive therapy sessions. It changed our life, we were taught as a whole family how to manage her. We no longer do OT with her but instead use multiple sports as OT, gymnastics and swimming especially work very well to balance her out. 

She sees a counselor every other week to talk which has been very helpful. The counselor specializing in special needs kiddos so she really understand DD1. Right now DD1's main therapy is language which is 4-5 hours a week since she does have severe LDs. I'm not ruling out that maybe eventually DD1 will have to be medicated again, I don't know what the years will bring, and honestly that is a big reason why I send her every other week, I know life isn't always going to be easy for her and I want her to ok with having to reach out for help. But for right now, we are managing without. I'm not saying life with her is easy, it never has been, and I doubt it ever will be, but we are holding our own for now. 

[Kristine233]

A lot of kids have these diagnosis and don't take meds, so no it doesn't always equate to medication. You have to look at it this way, you are not medicating the Asperger's or SPD... the medication is for other things that the child may struggle with. My Autistic son has severe Anxiety. He is on medication for anxiety that makes a night and day difference. My daughter is on no medications While she has some anxiety its not prohibiting her from participating in normal activities like it i for my son. What I always use as a guideline for my kids is "Does it alter their life in a way that they can't enjoy it like other kids?" The anxiety for my son was a big YES. My daughter is a no. My son takes medication.

I think its probably more common for our kids to take meds though. They don't have the same coping abilities and stressors may affect them more-so than neurotypical children. It doesn't mean every child with AS/ASD needs meds though.

[beachcomber]

Originally Posted by mom2happy 

This is kind of all over the place as I am also "all over the place" in my mind today.

Today I finally took DD to a pediatric neurologist for an evaluation. It was mostly questions and more appointments.

She was ALREADY talking about Zoloft. She said first we can try OT and speaking to a therapist for impulse control strategies, but she wants her to go to a psychiatrist for an evaluation also.

I am very concerned that the psychiatrist will be very quick to start drugs as a way of "troubleshooting".

I'm looking for experience with this beginning process of getting help for my almost 8 year old DD.

DD is smart, does well in school academically and in school with her friends (in a structured environment).

 She is unable to hold it together at home sometimes.

Her tantrums, rage, and impulse control when she is upset are similar to a 3-4 year old's behavior.

When every thing is the way she thinks it "should be", she is the most pleasant sweet person to be around, but when something doesn't go the right way- she flips.

She is inflexible, so rational ..... that she becomes irrational because of the fact that things are not black and white (hope that makes sense).

She is uncomfortable in a lot of social situations, the time it takes for her to be okay in some places is when the event is over. She is getting better with, but has had major problems with certain smells. Noises, loud places, high ceilings, too much stimulation bothers her.

She is extremely artistic and can spends hours on fine details and tiny drawings since she was 3. She has no problem being alone.

Play dates are not important to her. Just being in school is enough of a social life for her. She has a hard time with transitions and is inflexible about a lot of things.

Anyway, we go days where everything is great, but then we are back at the same place when she blows her stack and screams horrible things and feels this panicked rage when she feels an injustice has been done to her.

It seems like our newest addition to the family was a very hard transition for DD. It's taken almost a year for her to adjust to it and while things are getting better, I am worried about her being able to cope with life, the anger she feels, and the effect her outbursts will have on the other children.

I could keep going on. I guess I just needed to type this all out and see what anyone has to say.

You've pretty much described my daughter to a tee. I think the only difference is that mine is younger than yours. I found we got great success from working with a behavior consultant. She helped us identify ways of encouraging traits we wanted to see more of - namely being more flexible. She also helped us see the hot button issues for our kid and helped us help her adapt to changes in her routine.

I really don't think that meds are a requirement if you have a child with Aspie or SPD. I think that unless it's severely interfering with her happiness on a daily basis, it's worth pursuing other options first. Like behavior therapy, social skills group sessions, giving her tools to manage her anxiety if she's old enough to do that, etc. At 5 my daughter can sometimes use her calm down tools to stop herself from spiraling into a tantrum. When we help her use her tools, she can always calm down.

Good luck with this!