The Very Beginning (possible ASD), Helpful books, websites, and articles for dealing with my 4yo. - Mothering Forums

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#1 of 4 Old 07-17-2013, 04:26 PM - Thread Starter
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I am at the VERY beginning of our journey. No diagnosis, no evaluations (yet), no IEP or any other of those abbreviations that I see here. I know nothing, except that my son is struggling and so am I, and thanks to a wonderful and smart friend I know that many of his behavior are not "normal" and could indicate ASD. He is very active, very angry and defiant. He does not respond to much parenting at all. He is very smart and very verbal. No cognitive delays that I can see. He does not interact with peers well. He won't hold eye contact/discussion/etc with non-family members. He responds best to me but I cannot be on my game 100% of the time. I feel like if he was my only child and I could devote all my time and energy to him he would do very very well, but that is not the reality we live in and  he is going to have to be given some tools to be able to interact and deal with the world and life. But what tools? How and who teaches them? Please someone point me to some VERY BASIC resources to get me started. Books are great but its hard to find time to read them so articles and websites would be awesome. I am hoping for all of the above. And please if anyone out there was me at some point, tell me it gets better?! Tell me he will be able to make good (better) choices some day. Tell me that my other child(ren) wont suffer because he takes so much time/energy/focus. Tell me I can do this.

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#2 of 4 Old 07-18-2013, 02:06 PM
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Hi :) Not much help since I'm just starting this journey myself. I sorta did things backwards. We started with SLP, then went to an OT and have an appt to get an official diagnosis at the end of August with a NeuroDevelopmental Psychologist. I'm glad we did it this way because she's already getting help. Instead of sitting around twirling my thumbs while we wait for the diagnosis.


The biggest suggestion I would make it figure out where you want to go and get on the waiting list as quick as possible. Don't wait any longer. We've had to wait months to get into places and others are booked into the beginning of next year.


I've been looking at books on ASD and SPD, so far my favorite has been Out of Sync Child. I've yet to find an ASD book I would recommend :p I just started Dr Sears book though. In it is a suggestion for this site, but i've not looked it over yet:


See if there are any ASD support groups in your area. Autism Speaks website is a good place to start that search. I've found one in my area, but of course they don't have meetings during the summer..... I've made due with this site till I can connect with real people :p


Things are different with a developmentally atypical child in the house, but keep in mind in the end it will be to your other children's benefit. They will learn how to cope, handle, and help people that are a little outside the box. It may not seem that way now, but they are learning a kind of empathy that most people won't understand until they are adults and even some adults never do.


You can do it :) You'll learn a ton along the way too.

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#3 of 4 Old 07-18-2013, 04:04 PM
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Our DS is not on the spectrum so I'm sorry I don't have any great resources but I will say that, I think, the best thing you can do is get plugged into the system!


By system, I mean, take him as soon as possible for an evaluation with a good developmental pediatrician.  Before you assume Autism based on a few internet check lists, you need someone to help figure out exactly what is up with your son.  A dev ped can do a full evaluation, check for medical issues (for example some seizure disorders can present like Autism), and can help figure out what, if any, developmental disorders might (or might not) apply to your specific child.


A good dev ped can then help you figure out what, if any, interventions might help!  Raising special needs children can be very difficult and the best thing I've ever done is to build a team of people helping me.  It reduced the feeling I had that I needed to be 100% on and everything for our DS (who has a severe language disorder).  It has given me time and space and confidence to know that we are doing everything we can to make sure DS is on the right track. 


I hope others have some good basic resources for you, but honestly, ask for help, seek professionals and local support to help you navigate the complex world of special needs children :)

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#4 of 4 Old 07-18-2013, 10:51 PM
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I agree with fizgig that the first step is to set up an evaluation as soon as possible. It is essential to help you clarify and focus your learning and parenting efforts in the right direction. Your son could have ASD, or ADHD (which can also cause the behaviors you describe), an intense temperament, sensory issues or it could a combination of different things. 


My favorite starting place for autism information is through Autism Speaks. They have videos of children with very early warning signs of autism, side by side with videos of neurotypical children. Last I checked you have to register with your email to access the videos but I never received any spam. Its a very reputable organization that does amazing work with education about autism as well as research.


There is help out there. You need a team to help you so you don't totally burn out. Your younger kids will have a harder time coping with an exhausted burned out mom than with a special needs brother. So please take care of yourself. See someone just for you and vent! Don't fall into the trap that you are the only one who can deal with him. That is too much to expect from yourself. He may do better with you, yes, but it you need to give him opportunities to stretch and grow. So a couple hours with someone else so you can get some well-deserved respite is something that you both will benefit from in the long run. 


We started our SN journey at 4 years old. We saw a developmental ped, two child psychiatrists, countless therapists and finally a whole neuropsychiatric team at a children's hospital. It took us nearly 10 years from start to finish to get my DS's proper diagnosis. He was a tough cookie! Very smart, very verbal, very angry and violent. By age 14 we knew he had Aspergers, ADHD, anxiety, and bipolar-nos with above average intelligence. He takes an antidepressant for anxiety, a mood stabilizer, and and ADHD med to help with focus and impulse control. Makes a huge difference for him. He is now 17 and doing very well. He is going into his senior year, has a 3.8 GPA, has friends, and is making plans for college to major in chemistry. He is going on his third year as a student body officer at a small high school. He needs more help and support than a typical 17 yr old with taking care of himself. He can't clean his room to save his soul. He forgets to shower or brush his teeth on a regular basis. He is still pretty hot-headed, but his meds and all the therapy he's received keep his reactions within the normal range. We have a good relationship now and he thanks me for not allowing his diagnosis to define him and for having high expectations of him. Some good advice I got from a therapist was to set the bar at the child's personal best, and make that your expectation. Let their diagnosis guide you, but don't let it define him, or your family. 

Mom to DS(17) autismribbon.gif DS(15) autismribbon.gif DS(12) autismribbon.gif My gifted, quirky, wonderful teens!

Mama to Jack bouncy.gif11.08 and Liam  biggrinbounce.gif 9.11 and due with boy #6! stork-boy.gif  

Blissfully married to the love of my life since 8.8.8 partners.gif 

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