Aa
I don't even know where to begin..
My son is 4 and has been taken clonidine and guanfacine (tenex) for about 2 1/2 years now. It seems these drugs have helped but I think the problems are just underlying--not really getting to the root of the problem. He still has sleeping problems, anxiety problems and survives off milk. He gags on food-completely repulsed by food. I have done everything every doctor has told me to do--occupational therapy, less transitioning, psychologist....but it seems they just can't put their finger on just what exactly is wrong with him and I have spent thousands on sleep studies, psychological eval., and even have sent him to a psychologist once a week for the last year but yet the problems still exist, they just aren't as severe. I hate to still see my son awake all night, not eating, anxiety problems and sensory issues after all this. I guess my question is, what should I of expected from the psychologist? she specializes in children but never produced a report or really told me anything...she just took him to her room once a week for about 45 min, and handed me a bill---the sleep studies showed nothing even though he spent the entire night awake,,,but I guess that just tells if anything is wrong with his organs....the OT seems like its not doing anything either...what do I do? what the heck is wrong with him? and what are the long term effects of him taking this medicine? not only has his pediatrician treated him, but a behavioral specialist dr. from the division of Developmental disabilities(childrens hospital), a psychologist and a psychiatrist and yet they all just seem to not really be sure what is wrong----are they just waiting for him to get older to figure it out? they said at first mild autism, then anxiety then Post traumatic stress disorder... I feel I have done ALL I can and have spent all the money I can...I just want to see him eat and sleep and see an end in sight to him taking the medication. Any feedback is appreciated...Thanks, Jennifer
MEDICAL PROFESSIONAL
Jen,
Your situation sounds very challenging with many distinct problems and it is hard for me to figure out where to begin. First and foremost, you ask about the role of a psychologist in this situation. I'll assume that you already have a diagnosis of an autism spectrum disorder (ASD), if not, I suggest that you find a developmental pediatrician/pediatric neurologist or a developmental psychologist/psychiatrist that specializes in assessment and has experience with children with autism. For a child with significant issues, such as those you mention, there should be specific intervention plans that stem from appropriate assessment of their problem behaviors and with measurable treatment goals. If the psychologist has not written any reports or relayed specific intervention plans you should request them. If they are unwilling to do so you may want to find a qualified person who will help develop specific plans of treatment and provide training and support for implementing them.
It is my opinion that the most qualified person to develop educational and clinical planning for a child with ASD is a Board Certified Behavior Analyst (BCBA). Borrowing from another blog entry: regarding the problem behavior, although medication can, in some cases, be effective in suppressing problem behavior in children diagnosed with ASDs, the intervention that has been shown to be most reliably effective is applied behavior analysis. Over 30 years of rigorous experimental evidence has shown that children can learn appropriate alternatives to severe problem behavior given the right teaching arrangement. Behavior analytic interventions typically involve identifying the situations that are most problematic for a child and the things that are most rewarding and systematically teaching a child more appropriate ways of handling problematic situations and of obtaining reinforcing things and events. These interventions are individualized to the needs of the particular child and, with the right services, the prognosis for treatment of severe problem behavior can be quite good. I recommend that you look into identifying a BCBA who has experience treating behavior problems exhibited by children diagnosed with ASDs. You could start at the certificant registry on the BACB website: http://www.bacb.com/
On the feeding issue, I have extensive experience in pediatric feeding disorders and have provided services for over 40 cases of children with ASD failing to transition from liquids to solids, the problem more often than not isn't physiological. Children with ASD resist changes in routine and experience more feeding problems than do children without ASD. However, they tend to experience the same kinds of feeding problems, food selectivity, most often experienced by typically developing children. Solid food refusal is one form of selective acceptance. A BCBA with experience with feeding problems would be a good person to work with on this issue. However, several other disciplines can also work effectively with feeding difficulties. I suggest you seek out an assessment from a pediatric feeding disorders clinic in your area.
Celiac disorder was mentioned in another reply. This is a rare condition and is not more likely to occur in persons with an ASD.
Best of luck
Your situation sounds very challenging with many distinct problems and it is hard for me to figure out where to begin. First and foremost, you ask about the role of a psychologist in this situation. I'll assume that you already have a diagnosis of an autism spectrum disorder (ASD), if not, I suggest that you find a developmental pediatrician/pediatric neurologist or a developmental psychologist/psychiatrist that specializes in assessment and has experience with children with autism. For a child with significant issues, such as those you mention, there should be specific intervention plans that stem from appropriate assessment of their problem behaviors and with measurable treatment goals. If the psychologist has not written any reports or relayed specific intervention plans you should request them. If they are unwilling to do so you may want to find a qualified person who will help develop specific plans of treatment and provide training and support for implementing them.
It is my opinion that the most qualified person to develop educational and clinical planning for a child with ASD is a Board Certified Behavior Analyst (BCBA). Borrowing from another blog entry: regarding the problem behavior, although medication can, in some cases, be effective in suppressing problem behavior in children diagnosed with ASDs, the intervention that has been shown to be most reliably effective is applied behavior analysis. Over 30 years of rigorous experimental evidence has shown that children can learn appropriate alternatives to severe problem behavior given the right teaching arrangement. Behavior analytic interventions typically involve identifying the situations that are most problematic for a child and the things that are most rewarding and systematically teaching a child more appropriate ways of handling problematic situations and of obtaining reinforcing things and events. These interventions are individualized to the needs of the particular child and, with the right services, the prognosis for treatment of severe problem behavior can be quite good. I recommend that you look into identifying a BCBA who has experience treating behavior problems exhibited by children diagnosed with ASDs. You could start at the certificant registry on the BACB website: http://www.bacb.com/
On the feeding issue, I have extensive experience in pediatric feeding disorders and have provided services for over 40 cases of children with ASD failing to transition from liquids to solids, the problem more often than not isn't physiological. Children with ASD resist changes in routine and experience more feeding problems than do children without ASD. However, they tend to experience the same kinds of feeding problems, food selectivity, most often experienced by typically developing children. Solid food refusal is one form of selective acceptance. A BCBA with experience with feeding problems would be a good person to work with on this issue. However, several other disciplines can also work effectively with feeding difficulties. I suggest you seek out an assessment from a pediatric feeding disorders clinic in your area.
Celiac disorder was mentioned in another reply. This is a rare condition and is not more likely to occur in persons with an ASD.
Best of luck
Dr. Ahearn,
Thanks for your information. It really is helpful. I have never heard of a BCBA and that definitely sounds like the way I will go now. I copied and pasted your info to my desktop so that I can follow this advice one step at a time. Thanks so much for your time.
Jen
Thanks for your information. It really is helpful. I have never heard of a BCBA and that definitely sounds like the way I will go now. I copied and pasted your info to my desktop so that I can follow this advice one step at a time. Thanks so much for your time.
Jen
Thanks for the response. I know it's not about a label, it just seems if there were a label then there would be a better treatment plan. My son is really smart too. For example..whatever clothes I wear, he can tell me when the last time I wore them and where we went. He has a memory that is just unbelievable. when we go to the grocery store and I stand around wondering if I am out of something, I just have to ask him! :)
well-thanks
Jen
well-thanks
Jen
Dear Jennifer,
I have been at this for 4 years now. We are a little bit closer - he may have a mild case of Asbergers - but the label is not as imortant as the treatment. Not all children are "waiting room diagnosis" as one doctor likes to say.
It can be frustrating - we have spent over $25,000 ourselves. You may want to look into participating in some studies. We have done one or two and they tell you the test results. Many major medical centers are involved. We got a $4,000 celiac test done for free (he was gluten intolerant), free IQ and autism testing, and other things. NYU was going to send ABA specialists to help him in class for feww (until the teacher shot it down). He is going to be going to school soon - defiitely get all your doctors to write reports becuase it sounds like he is going to need an extensive IEP. Sometimes family counseling and therapy can be added on and paid for by the state. You are better than me - I hid my head in the sand until he was in first grade because he was quite a clever lad. We were hoping he would grow out of it - he didn't - but it is much better now.
Sam takes Tenex too. It isn't always a panacea but it does help.
Good luck.
Susan
I have been at this for 4 years now. We are a little bit closer - he may have a mild case of Asbergers - but the label is not as imortant as the treatment. Not all children are "waiting room diagnosis" as one doctor likes to say.
It can be frustrating - we have spent over $25,000 ourselves. You may want to look into participating in some studies. We have done one or two and they tell you the test results. Many major medical centers are involved. We got a $4,000 celiac test done for free (he was gluten intolerant), free IQ and autism testing, and other things. NYU was going to send ABA specialists to help him in class for feww (until the teacher shot it down). He is going to be going to school soon - defiitely get all your doctors to write reports becuase it sounds like he is going to need an extensive IEP. Sometimes family counseling and therapy can be added on and paid for by the state. You are better than me - I hid my head in the sand until he was in first grade because he was quite a clever lad. We were hoping he would grow out of it - he didn't - but it is much better now.
Sam takes Tenex too. It isn't always a panacea but it does help.
Good luck.
Susan
You are reading content posted in the Autism & Asperger's Syndrome Forum
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Yummy eats that will keep your child healthy and happy
What to expect in your growing baby
Is the PS3 the new Prozac … or causing ADHD in your kid?
Autism expert Dr. Richard Graff weighs in on the vaccine-autism media scandal.
Could your home be a haven for toxins that can cause ADHD?
