Just got a diagnoses today and unsure how to proceed

Discuss getting a diagnosis, educational help & electronic devices and apps for autism.

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chymes812
Posts: 1
Joined: Thu Mar 03, 2016 12:09 am

Just got a diagnoses today and unsure how to proceed

Postby chymes812 » Thu Mar 03, 2016 12:41 am

My son has had many issues for a number of issues with his impulse control and hyperactivity. I have been very aware of his differences as I am an educator and knew that things were not developmentally correct, but I was getting a lot of messages from the daycare and doctors that it was too early to determine if there was an issue. This past summer before starting Kindergarten I had him evaluated for ADHD or SPD. He was determined to have SPD (Sensory Seeking) We started on some of the therapies but the OT would not teach me how to help him in the home and just wanted to meet with him to work with him. I didn't like the approach and so I took it upon myself to hit the internet and start working on things on our own.

Now that my son has started Kindergarten it is becoming more and more evident that he is falling further behind his peers despite getting the support for the SPD. We placed him on an IEP before winter break with a diagnoses of Development Delay, but he has been escalating in his behavior and other issues recently. This afternoon I took him to the Dr. to see if there was a medical concern. Just in talking with the Dr. He was able to do a full look at my sons records and decided that we are most likely looking at Autism. While he won't diagnose it just yet without some more information, he is saying that my son is more likely to be best supported with an ASD diagnoses than an SPD diagnoses. I don't care what you call it, I just want support for my son. So here in lie my questions.

1) With a new diagnoses what do i do first?
2) Should I be looking for outside services or just rely on the services provided in the IEP?
3) I have a very unsupportive husband who believes that you can "punish" my son and he will learn to control his behaviors and follow directions. He thinks all of the labels and supports are unsupported by science and won't have anything to do with the therapies and process. It all falls upon me to be my son's advocate while educating my husband. Are there any articles or blogs that are geared for those people who are skeptical of the diagnoses but educates? I don't expect my husnabd to change or accept this over night, but I would like to provide him some light reading to help plant seeds to help our son.

Winnie
Posts: 4227
Joined: Sat Mar 18, 2006 2:48 pm

Re: Just got a diagnoses today and unsure how to proceed

Postby Winnie » Thu Mar 03, 2016 2:39 pm

Since your son actually doesn't have an official diagnosis yet, I think the first step is to find a professional with expertise in evaluating children with autism (much beyond reviewing records). This professional would be able to rule in or rule out a diagnosis of ASD, explain how this determination was made (for your son), explain the spectrum, and answer questions that you or your husband might have.

Your son is currently eligible for services under the category of Developmental Delay -- this is a sort of generic category intended to provide services for younger children -- but depending on your state (many states specify at age 6, some up to age 9), he will be reclassified to one of the following disability categories in order to continue receiving services (an IEP):

◾Autism
◾Deaf-blindness
◾Deafness
◾Emotional disturbance
◾Hearing impairment
◾Intellectual disability
◾Multiple disabilities
◾Orthopedic impairment
◾Other health impairment
◾Specific learning disability
◾Speech or language impairment
◾Traumatic brain injury
◾Visual impairment, including blindness

If your state reclassifies at age 6, this may happen within the year since he is already in kindergarten. One way or another, it would probably be a good idea to gather as much information regarding his delays and potential diagnosis as you can as soon as possible.

Through his public school eval leading to his IEP -- did anyone mention autism or ask if the ASD possibility had ever been raised by an outside professional?

Sad to hear that your husband is not being supportive at the moment -- sometimes parents spend a little time in denial hoping nothing serious is going on. Hopefully he will come around soon -- perhaps the diagnostic process with a professional he can consult will help that process along.

Not knowing your child, it would be difficult to point you to a blog that would ring familiar to your husband. Children who fall along the Asperger's area of the spectrum (term used prior to DSM V) are often not diagnosed until they are older, so for the purposes of google, you might find some bloggers out there who share your experience if you use Asperger's as a search term.

Good luck with it! Let us know how it goes.
Winnie
"Make it a powerful memory, the happiest you can remember."

zoymom
Posts: 12
Joined: Wed Mar 16, 2016 8:42 pm

Re: Just got a diagnoses today and unsure how to proceed

Postby zoymom » Thu Mar 17, 2016 12:09 pm

My husband also was not on board with my suspicions about my son's autism at first. He is also high functioning, so it makes it harder to convince people of what you know to be the case. But I scheduled a visit with a specialized developmental pediatrician and took my husband with us. After hearing from the developmental specialist that the specific ways he was falling behind (not responding to name, not pointing, not using language to request things, tantrums, etcs.) and how this was not just a personality difference but a developmental difference, my husband came around. He still is not convinced enough to start ABA therapy, but we have been doing speech therapy and biomedical changes with good results. Seeing the results of our genetic tests (23andme run through Genetic Genie) also helped him come around to there being a likely methylation issue with our son that was causing his symptoms.

ImagiRation
Posts: 1
Joined: Fri Mar 25, 2016 5:18 pm

Re: Just got a diagnoses today and unsure how to proceed

Postby ImagiRation » Fri Mar 25, 2016 5:24 pm

Dear Parents and Caretakers,

I’d like to introduce you to the therapy that you can administer to your child at home starting today. “Mental Imagery Therapy for Autism” (MITA) is a suite of games designed to help children with Autism Spectrum Disorders (ASD) learn to notice multiple features of objects in the world around them. This perceptual skill is essential to learning and is known to be difficult for those with ASD. The app is designed for early childhood (best-suited for ages 2-8) and intended for long-term, daily use. Its bright, interactive puzzles are based on therapeutic techniques that have been shown to be effective for individuals with ASD. MITA uses adaptive-learning technologies, meaning that the exercises will adapt to your child’s performance, resulting in a customized-learning experience. MITA is currently being used by over 10,000 kids with ASD. MITA is available for free on the Apple, Android and Amazon App Markets.

Dr. Andrey Vyshedskiy, Boston University and ImagiRation.com

Santosg
Posts: 196
Joined: Sun Aug 17, 2014 5:33 am

Re: Just got a diagnoses today and unsure how to proceed

Postby Santosg » Sun Mar 27, 2016 1:26 am

Dr, Andrey Vyshedskiy,

Thanks for letting us know about the app. I am going to check it out and introduce it to my son.

Kevin Levites
Posts: 5
Joined: Fri Feb 10, 2017 6:37 am

Re: Just got a diagnoses today and unsure how to proceed

Postby Kevin Levites » Fri Feb 10, 2017 7:34 am

chymes812 wrote:My son has had many issues for a number of issues with his impulse control and hyperactivity. I have been very aware of his differences as I am an educator and knew that things were not developmentally correct, but I was getting a lot of messages from the daycare and doctors that it was too early to determine if there was an issue. This past summer before starting Kindergarten I had him evaluated for ADHD or SPD. He was determined to have SPD (Sensory Seeking) We started on some of the therapies but the OT would not teach me how to help him in the home and just wanted to meet with him to work with him. I didn't like the approach and so I took it upon myself to hit the internet and start working on things on our own.

Now that my son has started Kindergarten it is becoming more and more evident that he is falling further behind his peers despite getting the support for the SPD. We placed him on an IEP before winter break with a diagnoses of Development Delay, but he has been escalating in his behavior and other issues recently. This afternoon I took him to the Dr. to see if there was a medical concern. Just in talking with the Dr. He was able to do a full look at my sons records and decided that we are most likely looking at Autism. While he won't diagnose it just yet without some more information, he is saying that my son is more likely to be best supported with an ASD diagnoses than an SPD diagnoses. I don't care what you call it, I just want support for my son. So here in lie my questions.

1) With a new diagnoses what do i do first?
2) Should I be looking for outside services or just rely on the services provided in the IEP?
3) I have a very unsupportive husband who believes that you can "punish" my son and he will learn to control his behaviors and follow directions. He thinks all of the labels and supports are unsupported by science and won't have anything to do with the therapies and process. It all falls upon me to be my son's advocate while educating my husband. Are there any articles or blogs that are geared for those people who are skeptical of the diagnoses but educates? I don't expect my husnabd to change or accept this over night, but I would like to provide him some light reading to help plant seeds to help our son.


I might be able to help, as I'm an autistic adult, and ran into many of these same problems as a kid.

First, understand that it's not your fault. My family never accepted my autism, and there were always problems. As an example, my mother (rest in peace) would say to me: "Asperger's kids have a narrow interest, at which they excel. All you have to do is make 'being normal' your special interest, and your autism will be invisible...which is the same thing as saying that it doesn't exist at all. That's why you choose to be autistic, and since you choose to be autistic...you deserve to lose your jobs and go through the problems you have because you create them.
"Just make 'being normal' your special interest, and then you'll be normal."
First, don't do this or allow your husband to do this.
Second, deal with sensory issues. Get his clothes at Goodwill or Salvation Army, where they will have been washed thousands of times, and make sure the tags are cut off. Also, make sure that the clothes are a little on the baggy side.
Third, try to see if sunglasses work toward helping him with sensory issues...especially around the fluorescent lights often found in schools.
Fourth, try to see if a tutor (who is aware of his sensory issues) might help him in his own environment after school. There are many reasons for this.
Speaking from my own experience, certain kinds of artificial lighting, noises, odors, skin sensations, all combine to make a sensory hell for anyone who is autistic, and it is very hard to cope with it. I would equate school work in a regular school room as being the same thing as trying to study while sitting in loud discothech with flashing lights, loud music, people talking loudly all over the place, etc.
If a subdued environment could be created for him, he might do quite well getting caught up on school work with a tutor to help him, provided (s)he understands these issues.
If you want to know what these issues are like, try to imagine the consequences of drug and/or alcohol abuse.
If you have ever been hung over, lights are too bright, abrupt noises are too loud (and painful). Also, if you have ever seen heroin and/or methamphetamine addicts, or known anybody into cocaine, you've seen them picking at their skin...or complaining about the "coke bugs" that were crawling all over them.
Then, I would like you to imagine trying to do school work (or sit for a job interview, or go to church, etc.) when it feels like thousands of bugs are crawling all over your skin, while sitting in a loud discothech.
He may accomplish much more in the way of getting caught up in school work with a tutor while sitting in a bathrobe in a quiet room (with no humming fans, no distant television) with subdued lighting.
Next, don't let anyone bully him. Autistic people (such as myself) are bullied all the time, and bullying interferes with schoolwork.
My belief is that we are bullied (in part) because we are socially incompetent, and don't understand when we do or say things that "set people off". Part of the other reason why we are bullied is because of motor clumsiness issues. I was quite clumsy in school, so I would bump into people in crowds or during sports, and this was interpreted as an intentional act...deserving of retribution.
I believe that many of the asian martial arts might be quite helpful to anyone who is autistic, as it helps with co-ordination and timing in sports and other physical activities. Also, the mental aspect of many of the martial arts (including meditation and focus) seem very helpful (at least for me) in dealing with the sensory cacophony that surrounds us all day long. As an example of this point, consider that a martial artist must cope with pain and continue to fight when injured as part of their training. The same techniques also help with the sensory discomforts of everyday life, and may make him more successful in school and work.
I hope that some of these points were helpful.
Good luck.


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