Looking For answers I am desperate!

No problems other than gestational diabetes during pregnancy. My daughter was full term and weighed 8 pounds and 14 ounces and was 19 ½ inches long. I had no complications during labor. She was Jaundice after birth with a bilirubin level of 21. She had a severe case of acid reflux and was put on medication. She could not hold her own head up at 6 months old. She could not sit up until the age of 14 months. She started to crawl at 15 months although it looked like she was flopping forward. There was no hand and knee coordination. She did not stand until 16 months old. Finally at 17 ½ months she started to walk. She walks now but her balance is off and she walks with a large gait. She wears shoe inserts because she walks on the inside parts of her feet. Now the PT wants her to wear braces on her legs because her knees seem to be buckling out on her when she walks. She cannot walk too much or she gets very tired. She has been diagnosed with Hypotonia, Infantile spasms that seem to be improving with medication, global developmental delays and a cleft Palate. She has Tubes in both her ears now to stop the chronic ear infections. She has had her cleft palate repaired just 2 weeks ago and her bifid uvula is now only one. She had periods of severe constipation as a baby and then some times weeks of severe diarrhea. She goes to PT, OT and speech. She still does not really talk only a handful of words. She does not seem to understand things very well. She responds to more visual cues than voice commands. Her hearing is ok but she needs new tubes again because the one in her right ear has dissolved and the fluid is building back up. She is 23 months old now and weighs only 23 pounds. She is small has a slightly large head with flattening on the right side. She has almond shaped eyes, large pupils, flat nasal bridge and long fingers and toes. She has trouble sleeping every night wakes up screaming, and does this weird movement with her hands and her eyes. Please Help!

[Jason C Bourret, Ph.D., BCBA-D]

Unfortunately, the challenges your daughter is facing go beyond those typically experienced by children with autism. It sounds like you’re doing the right things. It would be worth it to discuss diagnoses with your pediatrician and to seek out specialists who’ve worked with other children like your daughter. She may meet the criteria for an autism diagnosis, but there’s certainly more going on. The most important thing is to continue to push hard to get her all the services she needs. Early intensive behavioral intervention can do her a world of good in terms of helping her with communication and early skills and the more hours of services she can get in a week, the better she’ll do. Having a child struggling with the things your daughter is can be such an enormous challenge but keep getting her those services and she’ll amaze you with what she can accomplish.