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beachy12 08-19-2012 08:32 AM

Hi everyone. I am posting here because I am a new stepmom to a 14 year old boy who is profoundly autistic but not being treated for his disorder(s). I married the most wonderful man imaginable 4 months ago. We have a great relationship but his son causes a strain on our marriage. His son was diagnosed High Functioning autistic when he was 4 years old. He received intervention services for a few years. Then my hubby and his ex decided they didn't want him "labeled" so they pulled him out pf public school and enrolled him in a private school where since that time the child has not received any services. The child now lives with his mom and my husband sees him twice a week and he stays with us every other weekend. His son is not adjusting well to the new situation. It is apparent to me that he is profoundly autistic. He stims constantly while he is here. We have also had to stop him from sexual stimming behaviors in public. He barely speaks to me at all except when I ask him a question and then I get the shortest response possible. He was much more interactive with me before the wedding actually took place. He interacts only with his father. So even when we're together I am rejected and isolated by him. I have shared my feelings with my hubby but his initial response is to defend his actions etc. On some level I can understand but that doesn't make it fair. He has shared with me that he sees my efforts to inetract with his son and try to make him comfortable. I feel like I have to work so hard with this kid and it does no good because he really needs to be re-evaluated and receive services. I have discussed this with my hubby and he doesn't agree. I've shared my fears and concerns with him but he is still so resistant to any evaluations. My biggest concern is if his needs do not get met he will end up in a home of some sort and that isn't what I want for him. I'm willing to do whatever it takes to help him, this situation and my marriage but I am rowing the boat alone....with one paddle. I am frustrated and scared causing me to become emotional and physically ill. My husband does everyting for him like he's a baby. He has good traits too from what I witnessed in his interaction with my husband. He does make sure my husband knows when he doesn't want to do something. He sits with an annoyed look on his face, continuously asks when we are leaving etc. refuses to participate or speak, he wants his way only. He has been violent with his mother which concerns me as well. He walks on his toes, eats predominately with his hands, falls spontaneously, blinks constantly, doesn't want to shower or brush his teeth. Now my husband and I have him for 9 days. They left this morning to go on a trip for a few days because we know he can't be here for 9 days straight. My husband left and returned home because he forgot something and found me crying. I hated for him to see me that way but I just broke down. He feels incredibly guilty. I had tried explaining to him that I feel as hard as we may try to help his son adjust his autism prevents him from doing so. I feel like our life together won't work out unless he gets his son evaluated and into whatever services he needs. I also carry a lot of guilt because I can't fix this myself but for some reason I feel like I'm supposed to. I made the decision to see a therapist regarding all this but again, I don't know if it will be enough to help us. Can anyone offer any advice or insight?

RemiJP 08-19-2012 09:37 AM

This sounds like a really tough situation - negotiating the needs of a new step-child with a disability. It seems to me that his behaviors are likely to interfere with his academic achievement. It's really surprising to me that even in the case of a private school, that he would be fully integrated in all non-special education classes with no additional assistance! Does he demonstrate the behaviors you've seen at home, in school too?


Secondly, since he has been diagnosed with ASD, it's important for you to remember that his difficulties interacting with you likely do not stem from the fact that you are his new step-mom. As you know, the main difficulty many people with ASD face is in interacting with others. Less familiar people can be especially challenging for people with ASD to interact with. I think getting counseling on your part to learn about ways to interact with him would make a big difference. Even if he isn't getting adequate therapies at school, there are many things to try in the home environment that might help him and there are many excellent books out there on the topic. As for the larger issue of his unmet need for services, could you have a family meeting with your husband (and maybe his ex too) to talk about how you all think he's doing at home with daily living stuff (health/hygiene seem to be the big concern here) as well as your future goals and expectations for him?

beachy12 08-19-2012 10:35 AM

Hi RemiJP thank you for responding. As far as I know he does not stim at school he is able to control it until he gets home. However I have not observed him in school and my husband hasn't either. It only effects him academically in that he has some difficulty with reading which I think stems from a difficulty focusing. He does quite well in other subjects. My husband did tell me recently that the child is aware that he is different from the other kids at school. He only has one friend who he sees occassionally. He refuses to interact with children who have differences. Even though he's 14 emotionally he's more like 7 or 8 years old. I explained to my husband that although his autism is part of who he is it is not all of who he is. It kind of acts as a screen that doesn't allow people to see the other wonderful things about him. I further explained that it's not a character flaw or personality flaw and we can work with him at home in addition to services and help him function as well as possible for him so he could be happy. I am a teacher and I've worked with and had success with autistic students but this to me is a totally different animal altogether. I even told my husband that I would like to create a good environment for him in case he ever has to come and live with us permanently. Also that we are a family even if I am not his mother and I want for him to be a part of that. I guess I'm I'm just feeling very hopeless at the moment.

redmemory 09-25-2012 02:48 PM

I have the same problem, with a boy aged 5.  His bio mom doesn't really seem to realize there is a problem in the first place, but it is grossly apparent to everyone else.  She forgot to write down his last doctor appointment, so he missed it, and she didn't bother to call to reschedule it, so he has been cancelled from his previous mental health services provider.  His head start teachers last year told bio mom they thought he could be autistic, since he has difficulty communicating/speech, keeping eye contact, and many other odd behaviors (tip-toe walking, running/walking repeatedly in circles, difficulty sitting still, etc.).  Nothing was done to get him any help.  It is painful to watch this kid not get any kind of treatment for whatever condition he has, because he is basically being neglected, and it is also difficult to know what to do when he is at our house in order to help him.  My fiance recently got partial custody of him, but she still has primary custody over his schooling, so we are going to have to write a letter to the school requesting an evaluation and get her to agree to sign it, as well as consent to one.  It is so frustrating that some people do not care about their own children.  I have tried to even call cps about this as well as other neglectful things his bio mom is doing/ not doing, but they don't seem to want to hear what I have to say.  How could a mom not get treatment for her kid, especially when being told that there is potentially a problem??  Usually she is just full of lies and excuses that never make any sense anyways, so we know when she lies about important things.  I'm fed up with this situation.  It disgusts me.  I just want something to change.  irked.gif

mamarhu 09-25-2012 06:56 PM

I obviously don't know any of the people involved here IRL, but the OP sounds quite judgmental to me. I know it can be terribly difficult to live with high needs kids, especially if they are not your own. I have a son with autism, have been a therapeutic foster parent, do respite care for kids with developmental disabilities, and had a roommate with two autistic boys. Trust me, I really do get it.


But lacking any other information, I trust that the Mom and Dad of this kid have made the best decisions they could for the son they love. Therapy is not the be-all-end-all in the world of autism. It would not necessarily "fix" any of the behaviors described above. The step-mother's attitude of wanting to fix this child is offensive to me. Putting him in private school tells me the parents felt his needs were not being met in public school, so they made a conscious (and expensive) decision to meet his needs in a different way. Not all private schools accept special needs kids. My guess is that this school is doing something right - why else would he continue to attend?  My position about the labeling issue is different than the parents', but theirs is a valid opinion.


The mother and father have lived with and loved this child for 14 years. They are the PhD level experts in his care.


There is a world of difference between High Functioning Autism (his diagnosis) and "profoundly affected" and "profoundly autistic". The word profound is used in medical diagnosis - it is not a general adjective to be loosely thrown around in this context. I don't exactly mean to be arguing semantics here, but that is a fairly insulting term, in the way it was used in the original post.


The majority of the behaviors the OP mentioned sound like responses to stress to me. The boy is capable of "better behavior" when he is under less stress. The OP seemed more concerned with her hurt feelings than the reasons for the child's behavior. Sorry - you are the adult here. And you married this man as a package deal - you knew he had a kid with autism. It is your place to learn how to deal with this child, not his to learn how to deal with you. Yes, after you establish a relationship with him, you may have some impact on his table manners or hygiene. But at this early stage, you have not earned that right.


Hygiene issues are common in 14YO boys; autism sometimes amplifies the problem. This does not indicate a bad or neglectful parent.


This is by far the most aggressively critical post I have ever written on MDC (or anywhere else). I think the reason I feel so defensive is that I would be furious if my ex-husband's new wife stepped in and proposed to tell me how to parent my child - especially one with special needs she has no experience with. I don't think I crossed the UA lines. But I clearly have strong feelings on this subject, too.

beachy12 09-25-2012 08:26 PM

Well mamarhu I guess you didn't read the part where I asked for advice. When I wrote this post 2 months ago I was desperately seeking advice and support and not knowing where to begin. So early in my marriage I was overwhelmed and scared. This child's parents have built a bubble around his for several reasons, never did I say or imply that his parents made any decision out of neglect or the like. I also understand that it seemed to you that any kind of therapy would as you said "fix" him. His autism is part of who he is but not all of who he is. Unfortunately it is what most people see of him and he is so much more. He is struggling and unhappy which breaks my heart.
I have had many conversations with my husband about all of this. He does value my opinion and input which he has asked me for. I have not forced it on him although I do believe intervention is necessary.

Truth be told I find your tone and ignorance of of the finer details of my situation, of which you have assumed, quite offensive. Furthermore, you should not impose your experiences and situations on my own. You assumed I had no experience with autistic children. This is far from the truth. I am an educator and have had great success with all of the special needs children I have had the honor of teaching, including but not limited to autistic children. I can assure you educating them and living with them are two completely different scenarios and present unique challenges.

Furthermore, you call me judgemental? Perhaps you should have read through your own post first.

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