Trying to help Sister. My Nephew has Autism and I'm trying to figure out how to help.

I became an uncle in September 2010. It was around his 2nd Birthday that my fiancé and I noticed he wasn't speaking, and he wasn't interested in anything except his toy car. When visiting the very next year, he had just turned 3 and he was showing all of the hallmarks of Autism that I showed as a kid and then some. He was Diagnosed shortly after turning 3. It's been a roller coaster for my sister, and I am very concerned that she is letting what I went through as a kid effect her and my nephew. I was diagnosed at age 3 also, and I'm just months away from turning 30. I was bullied constantly until the middle of High School. Out of my two sisters, Andrea was the one that at times took part in the bullying. Now that we are older, have our lives and our careers, and the fact I've seen much worse as an adult and survived it, I simply don't care about the fact I was bullied. I want to tell her to let go of what happened back then, and not worry about me. I'm a supervisor at my workplace and have been with my company for 5 years. I'm friends with those who used to bully me, and I'm close with my sisters. The priority now is my Nephew. He's 5 and still not speaking much but is starting to. Recently someone somewhere screwed up, so for the moment, he's not receiving services outside of school, so now my sister is waiting on insurance to fix the problem. I suspect they are dragging their feet on the matter. Is there any way that on my upcoming visit, that I could perhaps take some of the pressure off of my sister?
  • Wow! You life speaks volumes! I don't have any answers right now, but I can ask around. Have you been able to tell your story to her? Similar to what you have said, that these days what happened with the bullies doesn't matter? In the midst of her getting services for your nephew, you might be. Able to give her encouragement and strength just by sharing moments in your life to build her up.
    Thank you for sharing.
    I'm surprised no one has responded as of yet.
    Peace
  • Wish I would have logged in earlier.

    I wasn't diagnosed until age 30 myself. NO services available to me at all, no accomodations, all of the bullying and getting suspended on average once every two years for fighting.

    And yet, I've had a successful career, I am a father, and I have a special needs son myself.

    I wanted to know why I was sucessful, when so many others are not. The answer lies in my obsessions- my software engineering is my obsession, and I can make money at it.

    Age 5 is not too early to engage a child on their obsessions- obsessions lead to hobbies- hobbies lead to careers and a successful, happy life.
  • Hi there. I can understand your worries. My 2-year old son just got diagnosed with Autism so my husband and I are feeling overwhelmed and are looking for support, so I can understand how your sister feels. I can understand the worries about bullying too, I got bullied a lot too as a kid. I guess all I can say is to be there a lot for her, to listen and be supportive of her, and help anyway you can. She is very lucky to have a caring and supportive brother like you.
  • There is hope! I was in the exact same situation with my son. I couldn't find the help he needed other than being treated with adhd drugs from his neurologist and his psychiatrist. The school didn't offer any help when it came to outside services that may be able to help. I'm not sure if it's the same in every state but in New Jersey where I live I'll tell you exactly how I found the services I need including ABA therapy, CBT therapy, one on one talk therapy, social skills therapy, etc.... and it's all free. It happened by chance, and I believe it was a gift from God. I prayed for help, and it came in the most unexpected way. One day I left my home to go to work and was met by a man holding a file folder. He asked if I was Pamela ...... (I don't really want to give out my last name for privacy issues), I said "yes" and then he told me that he was a case worker for DYFS, the division of youth and family services, or better known as child protective services. Someone had called on me, and I knew exactly who it was because there is only one insane person I know that does things like this when they feel like getting revenge. Long story short he explained why he was there and what I was apparently "doing". The report was unfounded and closed quickly, but while they were investigating me I asked them for help with my son. They set me up with an organization called Perform Care. A therapist came out once a week for 12 weeks and evaluated my son in every aspect and concluded that he did indeed need further services. So now I have Monmouth Cares involved, Monmouth is the county I live in, and they provided me with an ABA therapist that works with my son 2 hours a day 5 days a week, I have a counselor who has a child on the spectrum as well, I have a case manager that oversees his care and makes sure the school is doing everything they are supposed to that's required by law. I found out the school wasn't even doing what they were supposed to. My son had an I.E.P. but they were not giving him the services that I didn't even know he was entitled to. For example the school must give him a full neurological, psychological, educational, and developmental evaluation every 3 years. I wasn't aware of that. They also must put the therapies in place for the child which is required by law in all 50 states. A lot of schools won't tell you all of this, maybe it's because of funding or they're too busy. Long story short, they weren't doing what they were supposed to do. All it took was one call to child protective services and now my son finally has the school completely on board, a whole team of specialists working together so ensure the best possible outcome, and I finally have hope and the utmost gratitude to an agency that everyone fears--child protection services. If it wasn't for them, I'd still be lost and confused and not know where to turn to or be able to access the services he has now.
  • Oh and one more thing I found on this site. The group name "Therapies":

    Feds Clarify Obligations To Kids With Autism

    By MICHELLE DIAMENT

    July 17, 2014

    Federal officials say states must provide treatment services like ABA for kids with autism on Medicaid. (Francine Orr/Los Angeles Times/MCT)

    In what advocates are calling a major win, federal officials are for the first time telling states that Medicaid coverage must include treatments like applied behavior analysis for children with autism.
    Medicaid programs nationwide must offer “medically necessary diagnostic and treatment services” to kids with autism, the Centers for Medicare and Medicaid Services told states in abulletin this month. That includes everything from speech and occupational therapy to personal care services and medical equipment, the agency said.
    The services must be included in what’s known as the Early and Periodic Screening, Diagnosis and Treatment program, or EPSDT, a package of offerings that every state is required to provide children under age 21 who qualify for Medicaid.
    The move comes in response to an increasing number of inquiries in recent years from states facing legal action for denying services to Medicaid beneficiaries with autism, Melissa Harris, director of the Division of Benefits and Coverage at CMS, told members of the Interagency Autism Coordinating Committee recently.
    Many of the court cases focused on coverage of ABA therapy, though Harris said that CMS was careful not to single out ABA or any other specific treatment in its directive to states.
    “The expectation is children with autism are a population that need to have their service needs met under the state EPSDT obligation. ABA is one way to do it,” Harris said.
    Medicaid coverage for kids with autism has traditionally varied from state to state. Establishing national requirements will have a huge impact, advocates said.
    “This should be of enormous significance to beneficiaries across the country,” said Dan Unumb, executive director of Autism Speaks’ Autism Legal Resource Center. “It will dramatically increase access to critical, medically necessary care.”

    Copyright © 2014 Disability Scoop, LLC. All Rights Reserved.
  • In reply to pamelah8402:

    Thank you all. It’s been a long time since I was able to log on last. I’m now 31 and my Nephew is 7. Since the original post, I went and visited them in Calfornia a month after my post, and again in October 2016. He’s got a very long road ahead of him as does my Sister. After seeing them and talking to her many times over the phone, I also decided to sign waivers to release details from my Autism Evaluations for her to use as a reference should she ever need them. Her Husband is the best with him too. After everything I’ve seen and heard, he’s probably moderate to severe on the Spectrum but he’s in good hands. One of his services was there when I was visiting them, and the cool part was because of my experience with my diagnosis, they asked my fiancé and I both to take part. My fiancé is also on the spectrum. Again I’d like to thank all of you for your response. I was having a difficult time logging back in to see your responses but rest assured that your responses have hit their mark.
  • In reply to pamelah8402:

    Thank you all. It’s been a long time since I was able to log on last. I’m now 31 and my Nephew is 7. Since the original post, I went and visited them in Calfornia a month after my post, and again in October 2016. He’s got a very long road ahead of him as does my Sister. After seeing them and talking to her many times over the phone, I also decided to sign waivers to release details from my Autism Evaluations for her to use as a reference should she ever need them. Her Husband is the best with him too. After everything I’ve seen and heard, he’s probably moderate to severe on the Spectrum but he’s in good hands. One of his services was there when I was visiting them, and the cool part was because of my experience with my diagnosis, they asked my fiancé and I both to take part. My fiancé is also on the spectrum. Again I’d like to thank all of you for your response. I was having a difficult time logging back in to see your responses but rest assured that your responses have hit their mark.
  • In reply to pamelah8402:

    Thank you all. It’s been a long time since I was able to log on last. I’m now 31 and my Nephew is 7. Since the original post, I went and visited them in Calfornia a month after my post, and again in October 2016. He’s got a very long road ahead of him as does my Sister. After seeing them and talking to her many times over the phone, I also decided to sign waivers to release details from my Autism Evaluations for her to use as a reference should she ever need them. Her Husband is the best with him too. After everything I’ve seen and heard, he’s probably moderate to severe on the Spectrum but he’s in good hands. One of his services was there when I was visiting them, and the cool part was because of my experience with my diagnosis, they asked my fiancé and I both to take part. My fiancé is also on the spectrum. Again I’d like to thank all of you for your response. I was having a difficult time logging back in to see your responses but rest assured that your responses have hit their mark.
  • In reply to pamelah8402:

    Thank you all. It’s been a long time since I was able to log on last. I’m now 31 and my Nephew is 7. Since the original post, I went and visited them in Calfornia a month after my post, and again in October 2016. He’s got a very long road ahead of him as does my Sister. After seeing them and talking to her many times over the phone, I also decided to sign waivers to release details from my Autism Evaluations for her to use as a reference should she ever need them. Her Husband is the best with him too. After everything I’ve seen and heard, he’s probably moderate to severe on the Spectrum but he’s in good hands. One of his services was there when I was visiting them, and the cool part was because of my experience with my diagnosis, they asked my fiancé and I both to take part. My fiancé is also on the spectrum. Again I’d like to thank all of you for your response. I was having a difficult time logging back in to see your responses but rest assured that your responses have hit their mark.
  • In reply to pamelah8402:

    Thank you all. It’s been a long time since I was able to log on last. I’m now 31 and my Nephew is 7. Since the original post, I went and visited them in Calfornia a month after my post, and again in October 2016. He’s got a very long road ahead of him as does my Sister. After seeing them and talking to her many times over the phone, I also decided to sign waivers to release details from my Autism Evaluations for her to use as a reference should she ever need them. Her Husband is the best with him too. After everything I’ve seen and heard, he’s probably moderate to severe on the Spectrum but he’s in good hands. One of his services was there when I was visiting them, and the cool part was because of my experience with my diagnosis, they asked my fiancé and I both to take part. My fiancé is also on the spectrum. Again I’d like to thank all of you for your response. I was having a difficult time logging back in to see your responses but rest assured that your responses have hit their mark.