@A MyAutismTeam Member The "NOT" told about part of the diagnoses combined with the schools so called "non labeling" while "offering" those things called "RIGHTS" is part of the systematic process of non-inclusion, non-compliance, and non-helpful measures. Unless We the parents, do our own Research, Educating ourselves, Reaching out for Advocacy on our childrens behalves, Basically, the cracks they can sometimes fall through are unavoidable. Even with Early Interventions, by the time middle school ends, transitioning into high school can be difficult. It is just a sad sad reality.

We are doing the Private Assessments route as well, which has been an ongoing journey. At this point not one provider has mentioned anything about Seizures, however, since Essential Tremors are a Progressive Neurological disorder, more tests would need to be done. And as far as an ASD diagnosis, we have not gotten that. Only a PDD-nos dx during the Early intervention stage many years ago, ADHD/OHI, and switched to General Anxiety Disorder after they would not take him off of an FDA-unapproved sedating medication to counteract the ritalin...Toxic reaction, sleep disorder, and lasting effects which were damaging to a young child's changing biochemistry, body, brain and blood barriers.

I am not so much 'bitter' as I am thankful that for the most part we were able to reverse some of the medical problems. However, now my kid has a bit of resistance to the excessive doctor appointments...Which is a complication with Sensory or processing aka ASD and we still do not have the primary condition diagnosed.

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A MyAutis...

Thank you mindzfuleez@217. We have tried focusing on her skills of art and writing. She is still feeling depressed and sneaks out to smoke weed and will take pain pills to ease her depression. We pray scriptures over her and she resists them and says God doesn't love her.

StormySkye, Please try not to look at your daughter as if the diagnosis defines her, Nothing is necessarily "wrong" with her or our kids, they are "differently-abled" and we as parents are the first and main source of guidance, support, encouragement, and acceptance of who they are! Yes, "patience" indeed is an ongoing need for us as parents, and year after year it can be quite difficult. The tension is without a doubt a strain on you and your husband, for while the concern of finding the right therapist, or treatment methods take time to both assess and implement. Please try not to lose hope, don't give up on finding the therapeutic (Equine assisted therapy) or social enhancements (art classes or art therapies) that will both engage her and build up her strengths and make her inner ticking's come alive bringing her joy and self esteem. She is who she is, as you are who you and your husband are. It is the Strengths to be focused on always with love, and determination <3 Hope you find the right tools and skills for your daughter and your family

My daughter was diagnosed when she was 19 yrs. old. I knew something was wrong with her when she was a baby and symptoms got worse when she turned 12. She was colicky as a baby and clung to me and my husband. She did talk early, but had trouble learning Math. She has trouble socializing and has had only one true friend from church. Then her family left to sing out on the road. My daughter was devastated. She is immature for her age. She is very artistic. The older people love her and she can talk to them, but cannot relate to kids her age. If the kids are a lot younger, she can. Lindsay has a lot of meltdowns and is driving my husband and me crazy. Would like to get into a horse-type therapy. The medicines she takes do not seem to help-prozac, setraline and a few others. I left my job to be with her three years ago. I only worked part time since she was 12 years old and I stayed home full time for the first three years of her life. We are desperate for her to get help.

My HFA son was not Dx until 11 yo. He had a "working Dx" from our family psychologist of "Disruptive Behavior Disorder" which we were NOT told about, and the school counselor didn't see a need to "label" him. He had a history of sensory issues and aggression. I finally googled it myself and demanded he be tested for autism. We had that done by our private insurance as the school offered nothing, and we were not then aware of our rights. Yeah, I'm a little bitter lol. So much for early intervention!

I have heard seizures are associated with ASD, but I am not sure if that is what ET are? I am so glad your son pulled through the procedure!!!