Asperger's intervention roadmap questions

[Anonymous]

DS is 3 yrs and 11 months old and has been screened by Child Find in Loudoun county. DS seems to be interested in other children but is scared of interacting with them. He often hangs around the peripheral of other children, smiling at them, but won't join in. The psychologist (phd) who screened him identified a few Asperger's characteristics: not socializing with peers, fascinated by spinning objects, etc. but she cannot make a formal diagnosis due to her job restrictions at Child Find. The Special Education eligibility meeting will be held two days from now. The IEP meeting will be held in another month if DS is found to be eligible.

I am very confused in terms of what I shall do next besides waiting for the eligibility meeting to happen and the IEP to be drawn. Here are my specific questions.

1. I think we shall get DS diagnosed but I am not sure who I shall see to make the diagnosis: a psychologist, a psychiatrist, a neurologist, a neurophysiologist, or a neurodevelopmental pediatrician? Also, is it true that most professionals won't give a formal diagnosis until a child is older? He is 3 yrs and 11 months right now. Is he too young for a diagnosis?

2. It seems most AS children has an OT and Speech pathologist. Are these professionals recommended by the doctor/psychologist who makes the diagnosis? How would I know whether my son needs an OT or SP or some other professionals? He has no speech delay and can be quite eloquent but won't talk much in social situations. Would a speech pathologist help in this situation?

3. He's been seeing a clinical social worker for a month now for counseling. I made the appointment when I had no idea that a licensed clinical social worker cannot make diagnosis even if she specializes in ASD. I don't think DS is getting much from the past several sessions. He basically plays and ignores her questions and attempt to show appropriate social behavior through puppet plays. I noticed that most people in the SN forum had OT or SP but not a LCSW counselor. What type of professionals do you hire to teach your child social skills and address any behavior issues?

4. If an IEP provides SP and OT for your child, is it still necessary to hire private help?

5. Do you think it is necessary to enlist a parent advocate to attend the IEP meeting? If so, where to find the parent advocates?

I know this probably is the start of a lifelong journey for us and I want learn as much as possible. Thank you very much for sharing your thoughts.

[Anonymous]

1. Your child is not too young to be diagnosed with Asperger's/ASD. If I were you, I would get in contact with a developmental pediatrician now for a medical diagnosis. We use Dr. Dan Shapiro who only takes new patients age 4 and younger. Get in contact with him now. His practice is usually closed to new patients but be persistent - he regularly opens the practice. Dr. Dan is the best but does not take insurance. He is my DS's doctor and I cannot recommend him enough.

2. A developmental pediatrician can recommend an SLP and OT. We had our son evaluated by his public school for OT, SL, and PT in preK4 and received services through the school. Speech is a social skills class and SLP observation to consult with teachers weekly. We started and stopped private OT since the school OT addressed all DS's issues.

For my DS with AS, school services and supports via IEP has been great. We don't do private services although at one time we did private play based therapy where the therapist comes to our house and OT. My son's main issues were that he would not engage with classmates and fine/gross motor issues.

We used a educational consultant from the beginning of the IEP process and Dr. Dan also attended the first few IEP meetings. They were very helpful as was the school.

Having a good IEP once your son starts school is key. After a yr of services/IEP, my son's main issues in K are: he does not raise his hand enough and that he is slow to unpack in the morning and slow to pack up his stuff in the evening. Good luck!

[Anonymous]

Speech therapists can help with abstract speech and conversational skills.

[Anonymous]

We went through a similar experience. DS (3 yr 11 mo. then) was hesitant in his interactions with other children in preschool except one-on-one. No other issues were noted. We went through an evaluation by DC Early Stages, the equivalent of Child Find here. We also got an appointment with a developmental pediatrician (Kennedy Krieger Institute). In our case, Early Stages administered the ADOS, which is a standardized test for ASD and concluded that at that time, DS did not fall on the spectrum. The pediatrician at KKI evaluated DS and concluded that ADOS was not warranted.

We did not have any consultant at the eligibility meeting but Early Stages did find DS eligible and drafted an IEP for social/emotional developmental delay which was 1/2 hour/week of pragmatic speech at the local elementary school and 1 hour/week of consultation with an SLP. We haven't found it terribly useful though but feel that it would be important as we transition from pre-school to Kindergarten in a public or charter school. We don't have an OT for fine or gross motor issues, but most elementary schools likely have an OT in-house.

The developmental pediatrician is very important and it is worthwhile getting an appointment with one (Dr. Dan or KKI or Children's in Rockville are all good places). These places tend to have very long waiting times, so I would suggest getting on the list as soon as possible. Some of them do take insurance but most importantly, they recommend services and will be a useful resource for therapies, schools and strategies going forward.

[Anonymous]

13:54, thank you for the tips. Does Dr Shapiro have a website with his contact information? Do you mind sharing how much he charges for the diagnosis/testing? Thank you.

[Anonymous]

14:24 here. Meant to say that while we have no formal diagnosis yet, we are not completely ruling out the possibility of AS (or whatever DSM-V calls it). Also, if
you have a report from a dev. ped., it will help you in the IEP process, now or perhaps later.

[Anonymous]

14:24, Thank you. I called children's this morning. They are not accepting new patients. The receptionist did not mention a wait list. I will call and inquire again.

I called KKI. Someone is supposed to return my call in one to two days.

I can't find Dr. shapiro's contact info online. Do you have his website address?

[Anonymous]

Dr. Shapiro was about 1100 for the initial 4 visits which include a visit to DC's school, a play observation in his office, as well as two parent only visits. He is well worth the money. Depending on where you live, folks here can also recommend OT and ST, but many will need a prescription.

[Anonymous]

Anonymous wrote:13:54, thank you for the tips. Does Dr Shapiro have a website with his contact information? Do you mind sharing how much he charges for the diagnosis/testing? Thank you.

Off the top of my head, he charges $540? for initial contact, testing, background info. etc. His rates are $290/hr. We submit to insurance and get most of it back. His email is drdanshapiro at gmail dot com. Or you can do a search for his phone number. He works out of his house in Rockville.

[Anonymous]

raisingyourchallengingchild.com/contact.html

[Anonymous]

Anonymous wrote:14:24, Thank you. I called children's this morning. They are not accepting new patients. The receptionist did not mention a wait list. I will call and inquire again.

I called KKI. Someone is supposed to return my call in one to two days.

I can't find Dr. shapiro's contact info online. Do you have his website address?

14:24 here. Get on the waiting list wherever you can. Dr. Shapiro sent us a packet to fill out and mail with a check before scheduling an appointment. KKI called us as well and went over a checklist (mostly geared for Autism) on the phone and gave us an appointment for several months later. However, within a month, they called us back with an opening.

One word of advice. Whatever happens, don't let this process consume you but make sure you have as much information as you can gather and make decisions accordingly. You may or may not agree with Child Find but we've found that Early Stages was very professional and advocated for our child. So while we don't have a formal diagnosis, we do have an IEP, which will be a great help going forward, in case DS is on the spectrum. Good luck.

[Anonymous]

OP here. Thank you all for your suggestions. I emailed Dr Shapiro and put myself on the wait list of Children's National. The wait list at Children's is all the way into May 2014 right now.

[Anonymous]

Hi there - did you go through the CASD department to get on the waitlist at Children's National? I got on the waitlist in the summer and got through in about six months. Kennedy Krieger is much much longer. I can tell you that we spent around 3k for testing for what our insurance didn't cover. My son is a little older than yours, but by the time you get through the waitlist they should be able to diagnosis is applicable. I really liked the team approach to the diagnosis we received at Children's.

As for OT and SLP, when you go to the IEP meeting they may suggest those for him. If they don't, you bring it up and see what their response is. For OT, does he have trouble with fine motor skills that he should have at almost 4? For SLP, not only should they be looking at how he speaks himself but also how he interprets the language that he hears - for an Aspergers diagnosis, you may see a pragmatic language issue and then therapy would definitely be a good idea.

A counselor isn't what I would be doing at this age unless they are specifically working on social skills for the preschool level. Does he have tantrums out of the norm? Look into a Behaviorist along with the OT.

You may need outside OT and SLP outside of the IEP. Remember that when your child gets to school, they are there to meet the educational demands upon your child - they are there to affect all facets of his/her life and your child may need extra help.

I have never felt the need to hire outside people to come to the IEP meeting.

It can be a life long battle, but it seems like you are already asking the right questions and are willing to do what it takes, so take heart in that it will all end up okay!

[Anonymous]

Sorry, that should be that the school OT is NOT there to cover every facet of outside of school issues.

[Anonymous]

Anonymous wrote:Sorry, that should be that the school OT is NOT there to cover every facet of outside of school issues.

The school's OT may or may not address all fine motor issues. The one at our DC charter does: zippers, utensils, snaps, shoe laces, etc in addition to handwriting. Does not hurt to ask!