In the closet-- help!

[Anonymous]

I am not a secretive person. DS (4) was diagnosed with high functioning autism 6 months ago. I feel the need to be open about it. DH basically forbade me from telling anyone because he thinks DS will eventually "pass" as typical with appropriate intervention and does not want to stigmatize him. I see his side, but after 6 mos I feel pretty strongly this is not going away, and not being open with the world, friends, neighbors, family etc. is preventing him from getting all the support and understanding he needs to succeed. Anyone with experience on either side of this debate to contribute?

[Anonymous]

What is your husband's plan for obtaining these appropriate interventions? Part of being able to find appropriate interventions and therapies for my child is being plugged into a network of support from other moms and groups for special needs children. I would never have heard of my child's physical therapist without knowing other special needs moms. I would never have heard of her neurologist or her speech therapist. If your DH wants to impose this sort of rigid lockdown, what is his plan? Specifically, how does he intend for your child to build relationships, to have a social network, and to keep from being stigmatized?

I could say a lot more, that frankly your DH sounds deeply prejudiced against special needs children and even frightened of them, and should have some therapy. This isn't about him. It's about building the best possible environment for his child, and your child's needs should be first, not your DH's fears of stigma.

[Anonymous]

I know this is going to be difficult to do but it really sounds like you and your husband (okay, your husband) need to meet with either the psychologist who diagnosed your son or another therapist to discuss how to personally "process, question and accept" you DC's HFA.

I'm sure your son's doctor can either help you through this or refer you to someone who can. I work with many parents who struggle with this process and I think a parent meeting dealing with their feelings should be part of the whole diagnosis process.

Hang in there!

[Anonymous]

I could have written this post 2 years ago. My husband has had a very difficult time accepting that there's anything out of the ordinary with our son. We received an educational label of Asperger's from the school system but my husband never talks about it with anyone and seems annoyed when I mention it to someone. I want others to understand that my kid is not a bad kid who won't listen, but that he has a legitimate condition that makes life harder for him. His condition has improved tremendously over time, but our son still has quirky behavior that makes him stand out in a group.

My advice is to let others know about your child's condition on an as-needed basis - teachers, close family, caregivers. Get your child the therapy that he needs, but don't make it the center of your world or conversations. Have date nights with your husband where you don't talk about the kids. If your husband is like mine, he does recognize that your child's development is not normal, but he's grieving for lost expectations. Have your husband talk to the person who made the diagnosis. The more he learns about it, the less he will fear it. My son is now 6 and has made huge progress. HFA or AS is not the worst thing in the world.

FWIW, as I've learned more about Asperger's, I see signs of it in my husband, too. He has a good job, good relationship with his family, but little things are not quite typical.

[Anonymous]

Thanks PP's. I appreciate your insight and do agree. To clarify a bit, DS is in therapy of 3 different types. He has an IEP and his babysitter, his grandparents, and my closest friends know the diagnosis and help with treatment.

The challenge for me is that, for example, when acquaintances ask where does DS go to preschool, he doesn't want me to name the school, and when they ask why we commute so far, explain it is a SN school. When we go to a party, he doesn't want me to explain to people why I'm hovering around him instead of talking to people to make sure he has the one on one attention he needs, etc.

Of course, DS has issues. I think largely they are based on his emerging realization that he is also likely high functioning ASD, and this has rocked his world. But he knows for a fact that he passed, found a nice wife, has a great job, etc. He worries a lot that DS won't have that because this generation is being labelled "autistic" when his childhood he was just "quirky" and a bit of a loner. Of course, his rigid thinking does not help this!!!

[Anonymous]

I have had a somewhat similar situation with my DH (who is a doctor!) to research, diagnose and get services for our son. DC1 has shown symptoms of ADHD and Asperger's. He is fine motor delayed and speech delayed. But over the course of 6 years, I have had to do the research myself, present the evidence that our son is delayed/has issues, and argue my case. DH comes from a culture where these issues are little known, and as a consequence are usually swept under the rug or considered shameful. His medical training did not include the most recent child psychiatry findings. It does not help that DH himself has some of the same quirks! Which he denies, of course.
Finally our son's teachers insisted that he had an attention issue, which pushed DH to seek help for DC. So now he has a tentative ADHD diagnosis, and I have more ammunition to find appropriate therapies.

Just for your sanity, OP, you need to have a support group!

[Anonymous]

Anonymous wrote:Thanks PP's. I appreciate your insight and do agree. To clarify a bit, DS is in therapy of 3 different types. He has an IEP and his babysitter, his grandparents, and my closest friends know the diagnosis and help with treatment.

The challenge for me is that, for example, when acquaintances ask where does DS go to preschool, he doesn't want me to name the school, and when they ask why we commute so far, explain it is a SN school. When we go to a party, he doesn't want me to explain to people why I'm hovering around him instead of talking to people to make sure he has the one on one attention he needs, etc.

Of course, DS has issues. I think largely they are based on his emerging realization that he is also likely high functioning ASD, and this has rocked his world. But he knows for a fact that he passed, found a nice wife, has a great job, etc. He worries a lot that DS won't have that because this generation is being labelled "autistic" when his childhood he was just "quirky" and a bit of a loner. Of course, his rigid thinking does not help this!!!

8:55 again. Okay, that explains some things.

As far as your child's school, I'm actually with your DH on that. If people ask why my daughter doesn't go to the school down the block, I just say that we like the curriculum at her school. Or that we looked for the best school in the county. Her school has fantastic programs. Great facilities. I don't constantly drop the term special needs.

Also, the hovering...are you sure you need to explain why you do it? People don't necessarily need an explanation of your behavior, or to be talked through your actions.

[Anonymous]

based on his emerging realization that he is also likely high functioning ASD, and this has rocked his world. But he knows for a fact that he passed, found a nice wife, has a great job, etc. He worries a lot that DS won't have that because this generation is being labelled "autistic" when his childhood he was just "quirky" and a bit of a loner.

I'm not posting to dispute anything previously said by PPs. But you know what? There's a lot of truth in here. Millions of Americans throughout history, yes millions, have grown up to have productive lives surrounded by people who love them despite the fact that they didn't know they had "HFA" so they couldn't shout it proudly from the rooftops and "network."

There's no one correct answer for all parents. Some unlabeled kids of yore suffered -- and some did not. This is an inconvenient truth to many parents of super-mild SN kids.

[Anonymous]

I understand and have lived both sides of this. Here's what we do. We give out the info on a need to know basis. School personnel and professionals know as well as very close friends. With other friends if a situation comes up where we think the info would help, we simply describe the symptoms without the label. Some of our family knows, others would not get it and would just make our lives more stressful with their input so we tell them the least amount they need to know.

[Anonymous]

Let's review what we've been told.

OP's son has an IEP
He is in three different kinds of therapy
OP isn't able to leave his side at parties.

This doesn't sound like "quirky" to me. It doesn't sound like something that would have been glossed over 50 years ago. It sounds like Dad is in denial and embarrassed.

[Anonymous]

I just read Michael Lewis's book the Big Short- yes it is about shorting swaps, but one of the central figures of the book finds he has Asperbergers bascially because his wife pushes him to deal with it. Sometimes I find it is easier to show people examples of famous others with the issue to help them understand how common something is and should not be stigmatized.

[Anonymous]

I have two kids with adhd and learning disabilities. As my dcs have gotten older, dh sees more of himself in them and has realized that he likely has adhd as well. He doesn't have the learning disabilities and was able to compensate all through school, college and grad school. It has been a process for dh to accept and he has been in therapy for many years. He is generally a pessimist and always sees the worst whereas I tend to focus on dcs' positive accomplishments (however small they may be). Not saying I am perfect at all but it has helped to share the diagnosis (definitely with the school) and with friends. It has also helped me to become friends with other moms of kids with diagnoses. They can relate. I really find myself drifting away from the friends who always have to let me know how spectacular their kids are in every aspect of life.

[Anonymous]

Honestly, I think that the more parents talk about these things openly in a matter of fact manner (of course at appropriate moments), the less stigma there will be around these "differences". There is no reason to be ashamed, or embarassed. I know a lot of ASD/ADD/LD adults that are quite successful but never diagnosed, as 20-30 years ago there was a lot less information on the mild to moderate cases. Nor were there IEP's that can support the child to overcome these challenges.

Also, I talk to my daughter about her ADHD/LD's so that she knows that although she is a little different and has to work harder, that is ok because nobody is the same... and that she is good at other things.

[Anonymous]

I think its incredibly important to not treat this diagnosis like its a source of shame. Your child will need to be told as soon as he can understand it and if he is told to keep it a secret that will only send a message that there is something wrong with him. he will know he is different, I'm sure he already does. The goal is to raise him to be happy in his own skin and therefore to let him know this is only one aspect of him, it doesn't define him, but it does help him understand why he is the way he is. This is not a bad thing, a secret thing or a shameful thing and that means that everyone needs to be comfortable talking about it.

Which is to say your husband's approach is a recipe for more pain, more confusion, and is simply kicking the can down the road. But you know this already. I think you need to find a therapist for yourself, who preferably understands developmental issues in children and the effect on the whole family. Get your own support and get specific advice on how to negotiate your husband's desires with your and your DS' needs. It would be nice if your husband would see a therapist as well, but start with yourself. Good luck.

[Anonymous]

This is a clear-cut case for family counseling. No one is "wrong" here, you have a big issue to deal with, and you haven't found a compromise that works. Time to bring in a pro.