NF1 and Autistic Tendencies

Does anyone know if children with NF1 are likely to have autistic tendencies? We are trying to figure out if our son (diagnosed with NF1) is also on the Spectrum or if the symptoms are more just a result of his NF1.

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My son is in the spectrum and NF1. His is considered a very light Asperger's. I have been told there is a correlation. For some good news, though, his first year of Readiness Preschool has him acting like any other 4 1/2 year old.

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Yes - there is a connection. The learning delays that our kids have are often the same delays that autistic kids have. Sensory issues, motor skills, and social skills are all very common delays among NF kids.

In fact, for Jaxon, his learning delays were discovered before his NF. He is a VERY smart child so many people do not take his delays seriously. When I took him for a speech evaluation, the county also documented sensory integration problems and started him on physical and occupational therapy due to fine and gross motor delays. Since our pediatrician had told us that his spots were "harmless, like freckles" I hadn't thought to lift his shirt to show the county evaluators his spots. And, they never thought to ask. So, Jaxon received services for nine months before we understood why he had those delays.

With or without a label, the intervention services our kids need are often the same that autistic children would receive. Some early intervention services will begin them based on the NF diagnosis alone and others will wait until the actual delays are documented.

As a mother, I believe that those services make a difference. And, many of the books about sensory integration, social skills training, and aspergers are great tools to help us to know how to better parent our special kids.


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The two have been known to go hand in hand. My Max was diagnosed in November with Aspergers and he is now in a study on the relation between NF and Autism. I find it extremely interesting. NF is on Chromosone 17 and Autism can be found there also. There is a great book called " the asperger's answer book - the top 300 questions parents ask" I bought it and after almost all the questions I said "That's Max and that explains it!!

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I am very curious to know what kind of autistic tendencies your son is showing?

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Besides the speech delays (which some of the doctors are now thinking is more directly as a result of NF than other issues), he has always had what we refer to as "quirks." Before we started interventions (I'm a HUGE advocate for early intervention by the way), his eye contact was more of him staring through you rather than looking at you. He never seemed to respond to us coming in the room or calling his name (audiology tests came back normal). He never wanted to cuddle - resisted it. He has an EXTREME obsession with fans. (We can't go into Lowe's, Home Depot or even IHOP without major fits, because their fans are off.) He exhibits many of the "typical" stimulation movements that can be signs of autism (spinning, running in circles, self-injurious behaviors, etc.). It took a lot of work for us to get him to even acknowledge other children were around. He never pointed or tried to show us anything. He is VERY ritualistic with strange things. For example, certain objects have always had to be in specific spots (that do not necessarily make sense to us). He has also had very many sensory issues. We started working with him on our own when he was very young and were able to get professional therapists involved before he turned two. The doctors have been impressed with his progress. The latest specialist we saw said he doesn't think our son has autism (because of his progress and his cognitive abilities), but he is not ruling out the entire spectrum - especially Asperger's. He said he needs to see him around other kids, so he may even visit his preschool classroom to observe him. He has also suggested seeing a child psychologist and looking into more information about OCD. (He thinks we may be dealing with multiple issues that tend to overlap.) This, of course, is just a general overview of our son's signs.

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my son has speech problems and is adhd. he gets special ed classes in school. he gets speech and ot therapies. he dosent have any sensory issues but when he was younger he didnt like to be hugged or held unless he wanted to hug you, which wasnt often. he sees a genetics dr yrly, and this yr the dr wants me to schedule a app for my younest son. he is autistic and nonverbal.

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This sounds so much like my grand daughter. At least what we've been able to see of her. She has NF but her mom keeps cancelling the neuologist apts. She won't let us have any more contact since I told her Ella has signs of autism, plus she hates my son - the dad. All we can do is keep her in our prayers. After readind all you guys have posted I'm try to call yhe other gramma and see if she can help. Thanks everyone for being there.

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I did not like to be huged when I was small. To this day if you try and rub me when you hug me I hate it. For me it tends to make thigs start to hurt worse or just aggravate my tumors.

My family had to learn to just keep their hands still when touching me I.E hugging

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