DD's pediatrician wants her screened for autism

[Villainess]

My DD's pediatricians suggested that I have her screened for autism. They provided the names of some neurologists which have waiting lists 1year+ long, another I have an appt. for Nov. 12th and another I'm waiting for a call back.

I do have knowledge of autism, volunteering with ARC for 20 years and my 2 cousins are autistic, however due to circumstances we do not see them often at all; sadly I cannot tell you if they have Asperger's or not; I do know they both are 11yrs old and only say 2-6 words a piece. Their dad is my godfather, but he is in the middle of a divorce so I don't want to bother him to ask this and thought I could post a few questions here:

What methods/How is the child screened/diagnosed? DD just turned 2 last week. Is it a series of tests?
When a diagnosis is made, what type of therapies are there at her age? I'm sure this varies, but just an idea would be helpful.
What should I ask the doctor at this appt. What will they ask me? I want to be prepared so that if DD does have autism or another disorder, it can be diagnosed and we can evaluate what road to travel.

Thank you for your help!

 

[KirstenB]

Okay, here was our experience. Our dd had hypotonia (low muscle tone), so was in Early Intervention starting at 11 mths. They noticed her speech was delayed, so at 19 mths she started speech therapy with them. Some states call this program Birth to 3. It's a government program that will provide physical therapy, OT, speech therapy, and bill your insurance. If you don't have insurance, they will bill you on a sliding scale based on income. Regardless of when your appt is for an autism diagnosis, I'd call them (Early Intervention) in the meantime. They'll come to your home, and assess your daughter for free. This is not in place of an autism assessment, but rather just to see if she could benefit from therapy.

Our dd was 20 mths old when she was dx'd with mild autism. We took her to UVA Children's Hospital. She met with a team of developmental pediatricians, and an educator. She was given various assessments regarding her development, including, social, speech, physical, and cognitive. She didn't see a neurologist, but we may go that route in the future. We waited about 6 weeks to get her seen there.

I see you live in New Jersey. I participate in the Autism Speaks.org community boards online. It sounds like New Jersey and California are states where kids with autism receive really decent levels of service. I've read of children qualifying for ABA, applied behavioral analysis for many hours a week, in the home. Our dd does not get this at this time. I know here in Richmond, there's a local chapter called Commonwealth Autism that provides many resources for parents. See if you have a local chapter for autism, and they may be able to help you while you're waiting.

Now that our Zoe is 3, she's transitioned from Early Intervention to the public school, which provides speech, OT and PT during her special ed preschool classes. She's only been in class 4 weeks, and the progress is amazing. Her motor skills and speech, and ability to sit and listen have all increased dramatically.

to you. The earlier you can get help if your dd is autistic, the better. I found Dr STanley Greenspan's books on FLoortime very helpful. They provide lots of ways to work with your child yourself.

 

[stace1214]

for you! I'm sure you're going through a lot of emotions right now...as you move through the process of testing, possible diagnosis and therapies, definitely seek out support- there are many online autism message boards that will help. Also, many communities have autism groups that provide support for parents and siblings, advocacy support as well as activities for children and teens with autism. You daughters doctor would be able to give you more information.

As far the actual process of getting a diagnosis, I can't answer. I'm a special education teacher, but have only worked with school age children. I can however tell you that the children I have worked with who have recieved early intervention services are the ones who make the most progress in school. It truly makes a difference.

Good luck to you and your family! I'll be thinking about you!

 

[bookwormde]

At that age the first thing they will look at is language development. If language is significantly delayed then they will be screening for either classic of HFA Autism. If she has relatively standard language development then they will be looking at the possibility of Aspersers. They will look at her social pattern and play patterns and intellectual development and style. At 2 it is not easy to do a screening for HFA or Aspergers, which is definitive. You will get questionnaires about her and they will do some behavioral and developmental tests. If executive function differentials are present they will likely do an auditory processing test (again difficult at this age). It is also much more difficult to screen females for HFA and Aspergers due to the stronger “family” social skills which are innate in females, which may mask a deficit in societal social skills.

Make sure you check out the practice of the neurologist to be sure that they specialize in Autism spectrum children, ideally at least 50% of their patients should be spectrum individuals and that they are doing at least 50 hours of continuing education per year in the field. You will likely have to travel to find someone with these qualifications. If you have to wait for a qualified neurologist it is worth is to avoid a misdiagnosis which is common with clinicians who do not have the proper training and experience with spectrum children, the good news is that New Jersey is one of the more progressive states for Autism.

Therapies for classic autism are numerous even at this age, for Aspergers they are a little less well understood since it has been somewhat unusual to get a diagnosis at the age of 2.

With 2 spectrum children genetic relatives a screening is appropriate even at this young age.

There is a broad variability in the characteristics of children on the autism spectrum so trying to “pre-guess” where you are headed is difficult. I am an Aspie (a person with spectrum characteristics who do not meet the clinical definition for Aspergers) from a long line of Aspies, who are scientists, engineers and inventors. I have a son who is clinical Aspergers and I would have been disappointed if I had not had at least one child who was an Aspie, so everyone’s experience and perception is different.


It is important to educate yourself also. If she is reasonably verbal I would suggest reading Tony Attwood, The Complete Guide to Aspergers (c2007), which is available on Amazon for about $25. He is the preeminent clinician for Aspergers in the world. He is also presenting a seminar in Valley Forge in November, which if you are working with autistic individuals is will worth the day and fee.

bookwormde

 

[jodifla]

My DD's pediatricians suggested that I have her screened for autism. They provided the names of some neurologists which have waiting lists 1year+ long, another I have an appt. for Nov. 12th and another I'm waiting for a call back.

I do have knowledge of autism, volunteering with ARC for 20 years and my 2 cousins are autistic, however due to circumstances we do not see them often at all; sadly I cannot tell you if they have Asperger's or not; I do know they both are 11yrs old and only say 2-6 words a piece. Their dad is my godfather, but he is in the middle of a divorce so I don't want to bother him to ask this and thought I could post a few questions here:

What methods/How is the child screened/diagnosed? DD just turned 2 last week. Is it a series of tests?
When a diagnosis is made, what type of therapies are there at her age? I'm sure this varies, but just an idea would be helpful.
What should I ask the doctor at this appt. What will they ask me? I want to be prepared so that if DD does have autism or another disorder, it can be diagnosed and we can evaluate what road to travel.

Thank you for your help!

My suggestion is to make sure you get a QUALIFIED person to do the Dx. There are a lot of people who lack the training to differentiate between autism and other disorders. Because autism is in the "in" diagnosis, lots of kids are being mislabeled, IMO.

I belong to a late talkers group and many of those kids were labeled autistic, mainly by the school systems, when what they actually had was a language disorder. Years later when their language came in, "poof" the autism DX went away, but not without years of heartache for parent and child.

Diagnosing at 2 correctly is actually pretty difficult. There's a high rate of wrong Dxs at that age. The problem of getting an autism DX is that there is no one treatment for children; you are basically sent out to the streets with a devastating DX that may or may not be true, with not guidelines on what to do next for your child.

You asked about DX tests. The CARS and the ADOS are two of them. It takes HOURS AND HOURS of training to accurately do the tests, and HOURS to give them. There's also parent checklists like the MCHAT that's used as a screening test.

If I were in your shoes, even while I was waiting, I'd be treating whatever symptoms you see that are problematic. Speech therapy for speech delay, and Floortime for connecting with your child.

Also, you can have your child evaluated by the school district. Some are great, some are OK, some are lousy, so do some homework before you go this route. The state will pay for many treatments if you do this.

Also, check out Dr. Stanley Greenspan and Dr. Jim McDonald for their treatment suggestions.

 

[pilgrimr]

We went the route of seeing a neurologist first that was recommended by my son's doctor. His role was to make sure that there was nothing chemical or biological that was causing his delay. He underwent a lot of blood test, an ekg, and a mri. After the neurologist got his results and saw that they were normal, then we were referred to the local child study center. He did say that he believed that he was autistic, but it was not an official diagnoisis. At the child study center, a doctor evaluated him and diagnoised him as autistic. Even after this diagnoisis, the school still wanted their own evaluation. Before he was classified as PPD-NOS. The evaluation was a series of questions that they ask about him. Then they observe child and give there diagnoisis. Hope this helps.

 

[Hasil72]

I agree with all the previous posters about seeing a neurologist who specializes in autism and its related dx. We experienced the same wait list issues. All youwant to do is get help for your child as soon as you can while they tell you sorry, we're full for the next 11 months.

In the meantime, I would definitely call your pediatrician's office to get the local early intervention office number. They will send a group of people to your home to evaluate your daughter. Normally a PT, OT, social worker/psycholoist. They assess her skills levels by doing fun things while the social worker has you fill out a huge questionnaire and talks to you about your preganancy, when your daughter reached milestones, etc. While they can't officially diagnose your daughter, they can pin point difficulties in speech, etc. and start therapy. We didn't know about it with DS but had it for DD's developmental delays. They were wonderful. They come direct to the house.

Don't gice up on finding an appointment with the doctor of your choice. We called CHOP-over a year wait and duPont-not even accepting appointments. duPont called me back within a few weeks to see if we were still interested in an appointment.

Good luck!

 

[BeckyScott]

What methods/How is the child screened/diagnosed? DD just turned 2 last week. Is it a series of tests?
When a diagnosis is made, what type of therapies are there at her age? I'm sure this varies, but just an idea would be helpful.
What should I ask the doctor at this appt. What will they ask me? I want to be prepared so that if DD does have autism or another disorder, it can be diagnosed and we can evaluate what road to travel.

Justin was diagnosed at 2 1/2 (although we'd been in therapy for about a year before then 'cause like you, it took over 6 months to get an appointment).

We had a team eval at a big children's hospital. This included developmental ped, psych, OT, PT, SLP. At that age, what they do is "play" with the child, as an adult you'll see what they're doing, but the child is supposed to think they're just playing. For us, it was several hours long, because there were 5people each needing to test, although usually there was more than one going at a time.

Whatever therapists/drs weren't in the room testing Justin, they tagged out and did something very akin to the Spanish Inquisition with me in a different room. Basically, every date of every milestone, pregnancy and birth complications, parent family history, sibling information, can you tell us every single thing the child did since the day he was born? Pretty much. Not enough coffee in the world.

Because it was a team eval, we left after the evaluation and then had an appointment a week later for the big parent sit-down.

I agree to go ahead and get hooked up with the local Early Intervention people- they'll get the ball rolling while you wait for the eval.

 

[Villainess]

Thank you all so much for sharing your experiences. I will be calling Early Intervention as soon as I get both kiddos down for their naps - hopefully within the hour!

One thing that does have me concerned with all the reading that I've been doing was my pregnancy with her, and now that I see the doctors will ask about your pregnancy. I was 7 1/2 - close to 8 mos preg. when I was at work my right side of my body went completely numb and I had blurry/spotty vision. I was evaluated for a stroke, diagnosis: I didn't. Two weeks later, I began having what they called 'episodes'. From what I've been told my head/shoulders would shake uncontrollably and my arms would be tight close to my body. There was no rhyme or reason to when they would come and the only cue being I would feel a wave of heat overcome me. They weren't seizures, so they called them episodes. I saw neurologists - had EKG, MRI, cat scan, ultrasounds and was evaluated by a psychologist. Noone had an answer - still don't. With my 2nd pregnancy, none of this happened. Now, I don't know if any of this is relevant, but since I've been noticing the questioning about pregnancy, I assume it will be worth mentioning at least.

Some things that have raised concern with her pediatrician are:
- she is absolutely hysterical at the sight of the dr's office, building and when seeing the nurses/doctors is almost to the point of hyperventilation
-not using words that she used to say frequently and was saying at 7-13mos. Noticed the decrease in the words around age 20-21 mos (words such as thank you - she's said that since she was 9 mos, Tigger, bounce, cup, dog, baa (for sheep).
-fascination with toes/feet/shoes - sniffs them
-clasps hands, holds them close to the body and moves them back and forth
-used to say hi to strangers, now she wraps herself around my leg and buries her face or, if I'm holding her will bury her face in my shoulder
-points and grunts to fridge and cabinets, will say "yum" but won't say what she wants (ie - cup, apple, cookie - words she has used before).
-pinches me underarms, on hand, behind ears - not sure if this relaxes her/comforts her, usually this happens after she has been upset or is tired
-recently (w/in past 2 weeks) she will flap her right arm (elbow in) - I guess flapping is more at the wrist. This happens when she is frustrated at a restaurant and wants to hold the adult fork/spoon or drink from my glass and I tell her no or when I don't understand what she wants by her grunting and show her the wrong item.

Thank you again for your advice. I'm sure I will have more questions and I will keep you updated!

 

[kaffinito]

As you're going into this don't forget that there are many different types of Autism Spectrum Disorders. Take bookwormde's advice and check out Tony Attwoods book. Ask a lot of questions, and demand answers (nicely) when appropriate.

Also, try to rule out food allergies, and a communications disorder. My oldest was tested for a communications disorder, had testing for food allergies, had testing to check for levels of metals, an eeg, and a lot of other tests run before I was able to accept the diagnoses of Autism. However, with my oldest it was a little different, since he also has ADHD and is bipolar as well. We all had to take care of the first two before the autism popped out.

So, take a deep breath, read, get educated, and here is a big and well wishes!

 

[Ali]

Bookwordmed said "Therapies for classic autism are numerous even at this age, for Aspergers they are a little less well understood since it has been somewhat unusual to get a diagnosis at the age of 2."

My son was diagnosed with PDD-NOS probable aspergers at 23 months

Serious early intervention and socialization and total focus on helping him has helped him to be almost indistinguishable from the Neurotypcal kids in his 2nd grade class. Psychiarist and psychologist still call him quirky and with Pdd-Nos but won't diagnose with Aspergers because he is so "normal" and able to fit in with society.

I teach the age 3 to 5 pre-k special ed class that the OP has been referred to and that has been spoken about and I appreciate an earlier poster saying that her child has made great progress in 4 weeks! I think all of my kids have come a long way in 4 weeks too!

Good luck

 

[bookwormde]

A little off topic but still helpful for the OP,

When HFA and Aspergers and other spectrum children enter a program where the staff is well educated and experienced in the most current information and accommodations and practices, they typically make stunning progress almost immediately in most cases. From my experience is it not because they all of the sudden “learn” a bunch of skills, but is because being in an environment where people understand the nature and breadth of the spectrum neurovariant and know how to identify and accommodate for sensory issues, do not expect neurotypical social processes and accommodate with the programs style to this and generally just “get it” which immediately lowers the anxiety level and the maladaptive manifestations that result form high anxiety levels, of the child and delivers the “world” in a form which is needed for development. Only once this environment is achieved, can the non-academic and academic curriculums, which our children need be taught effectively, to reach their full potential from the amazing “gifts” they have been given.

Ali, thanks for being one of those helping in a program which obviously has these qualities.

bookwormde

 

[BeckyScott]

bookworm, I have noticed, too, with my son, he has the very "typical child" trait of modifying his skills depending on the situation.

In other words, he was potty-trained at preschool but not at home. He would also talk more at preschool than at home.

He will ride the big tricycle in PT but won't ride the $200 one we have for him at home. It's toooooo haaaaaard!

This has manifested since then, into him bringing home homework and me struggling with him for a half hour off of 10 math problems. I am sure that the teacher didn't explain it to him well, and seek the SpEd teacher for help. Only to find out that he's doing the same problems in class just fine.

(this is the same child who was just weeks ago doing double-digit subtraction within a word problem in his head)

And yes, I know... he does know how to push Mommy's buttons. He knows different things are expected different places. He knew Mommy would just change his Pull-up and so if he was busy playing, oh well.... And he has it in his little head that if he doesn't want to do something, if it's an inconvenience to him, good luck trying to get him to do it.

Point being, I think, that a good preschool and understanding teachers can make a big difference. The atmosphere of a classroom, in a situation where autism is understood and the child understands the expectations, they can make better progress than they will at home.

 

[bookwormde]

OT

Becky

Our children are still in many ways like other children, they need “encouragement” to do new thing and things that are not their favorites.

In the case of homework sometimes it is just the NT issue of just not wanting to do it, but in many cases this may play a part but there are other issues, which magnify this situation related to the spectrum neurovariant mind. I have found that with the memory differentials it often takes a “kick start” to get them going on something that they have in the past been proficient at.

It is important to remember that often our children are amazingly advanced in their intellectual thought process but lack the social skills and maturity to put issues into the “bigger picture”. Since we do not have the standard NT social drives to use to “entice” them to do things, we have for the most part fall back on the time consuming task of providing logical basis.

Good teachers “read” there students and when well educated and “get it” are able to use alternate methodologies to get the best out of our children.

I am sure we have all experience and will in the future have to deal with the situation you describe. For my son I take the time to eliminate all the items related to being Apergers to find out if it is just “not wanting to do it” then I provide a logical basis for the need of doing it. This tends to be very time consuming but in 98% of the time allows us to move forward.

bookwormde

 

[bopper]

I don't want to alarm you, but some of the symptoms you describe sound like it could be Rett's syndrome. It can seem like autism with the hand flapping, but the hand flapping plus the fact that she is losing some words she used to know and the panic attacks at the doctors is a clue to Rett's.

http://www.ninds.nih.gov/disorders/rett/detail_rett.htm
http://en.wikipedia.org/wiki/Rett_syndrome

 

[Villainess]

I don't want to alarm you, but some of the symptoms you describe sound like it could be Rett's syndrome. It can seem like autism with the hand flapping, but the hand flapping plus the fact that she is losing some words she used to know and the panic attacks at the doctors is a clue to Rett's.

http://www.ninds.nih.gov/disorders/rett/detail_rett.htm
http://en.wikipedia.org/wiki/Rett_syndrome

Thank you for the links. I've had a couple of PMs suggesting this as well. I have ordered some books mentioned and they should be arriving in the next day or so.

 

[Villainess]

I just thought I would update and let you all know that I called the Childrens Specialized hospital; I answered some screening questions about DD and am now waiting to receive a call about which avenue for screening they recommend and to schedule the appointment.

One question, I was speaking with my cousin (whose 2 nieces have severe autism), she stated that when they were diagnosed it was classified as severe autism brought on by outside sources. How is this determined?

 

[bookwormde]

Having spectrum genetics/characteristics is not brought on by outside sources but anything, which affects cognitive capabilities or otherwise limits brain function will cause an individual to move towards the classic/severe end of the spectrum. I would guess that this is what they meant even though there wording is a bit of a misnomer.

bookwormde

 

[bopper]

Any updates?