Ex Husband wants to tell Son he has autism

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

Moderator: ModeratorBill

autismhelp33
Posts: 2
Joined: Fri Sep 18, 2015 1:32 pm

Ex Husband wants to tell Son he has autism

Postby autismhelp33 » Fri Sep 18, 2015 1:37 pm

I'm in a predicament. I'm a mother of a child that was diagnosed with autism at the age of 2. As parents we worked extremely hard with top doctors and specialists in autism to help him overcome his diagnosis. Now my child is 9 years old and displays no signs of autism. My son has recently asked a lot of questions that pertain to my work with my non profit organization that deals with children with autism, ADD/ADHD, Epilepsy, etc. and is starting to question what they are. The issue is now my ex-husband feels that our son is ready to be told about his autism. I completely disagree with him on this. I feel like he is too young to fully grasp what autism is and this will make him feel different amongst his peers. Why make my child feel like he is different?

Dr. B.J. Freeman, Ph.D. also feels like it is time to tell him about his autism. Dr. Freeman is Professor Emerita of Medical Psychology at UCLA School of Medicine and is Founder and past Director of the UCLA Autism Evaluation Clinic, and co-founder of UCLA’s Early Childhood Partial Hospitalization Program. She is considered an international authority in the diagnosis, psychological assessment and treatment of children and adults with autism spectrum disorders. I have a lot of respect for her, but I don't agree with her on this.

My question to all of you is, if you are autistic, would you wish to know that you are autistic? Or better not knowing if you aren't displaying any signs?

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

Re: Ex Husband wants to tell Son he has autism

Postby Santosg » Fri Sep 18, 2015 11:40 pm

If your son no longer displays any signs of autism he is by definition not autistic. So, in a sense, you can't tell him he has something he does not have. Now, if he is experiencing delays and social and communicative difficulties--no matter how 'minor' they might be--in relations to his peers it is another matter. So your posts contains an open contradiction. Many children outgrow autism. It is not the majority but by no means unheard of and impossible.

In a sense autism is black and white. You either have it or you don't. You can't 'have autism' and not show the signs. The signs are the diagnosis and nothing more. No set of MRI or tests can offer definitive conclusions as to who has autism or not or make declaration that is forever valid.

In regard to B.J. Freeman, while no doubt an authority on matters of autism, is not an authority on your son. You are. So the opinion of an expert is essentially mute. Not worth even discussing. This rests entirely between you and your husband.

I don't think that a child who is 9 has the intellectual and emotional ability to detach themselves from the image a parent or authority figure projects on their defined self. You can't really speak properly to his about 'autism' when your own post shows your own ambiance as to the meaning. 'Son, you have autism.' But if what you say is true, HE CAN'T. In every way that is meaningful, children only know who they are in relation to what the world tells them and affirms. This period of his life is about building a very powerful self imagine, a self concept. He must always be spoken to in ways that empower him.

So, in a sense, I'd say that if you are going to speak to him about autism you do it in the most powerful and positive light possible. Tell him about who incredible he is, how he was a different child but one that has been able to overcome obstacles and barriers. Tell him that you work with autistic children because there are others like him, children that, if given a chance to develop are able to flourish and do great things. So, again, speak of autism as something that is not so much a definition of who he is but a milestone on the road to his own self realization. A part of his past that exemplifies his ability to overcome and scale the challenges of life. But don't focus exclusively on autism in relation to this ability, also other accomplishments such as his determination to 'write' or 'cycle', etc.

For the most part, I would not actually recommend speaking about this to him in any detail. Not because of how he'll react, but about the altered view that people around him will have. Teachers, peers, and the community instantly alter their behavior around children that are perceived as disabled. They set much lower expectations, excuse certain behaviors, and otherwise marginalize and patronize them. The best of intentions--but with negative consequences.
I suggest having this discussion with him as he reaches adulthood. Late teens at the earliest.

For children that continue to have autism, it is another matter entirely and they should definitely be made away as soon as they can understand what autism means. It helps them recognize their deficits and work around them.

Lastly, I think that everyone on the board--myself included--would love to know what steps you took with your son to have such a positive outcome. Please do share your insights and recommendations. It would be greatly appreciated.

amndzon
Posts: 94
Joined: Fri Aug 10, 2012 9:05 am

Re: Ex Husband wants to tell Son he has autism

Postby amndzon » Sat Sep 19, 2015 3:08 pm

I have been in the same situation as you, my daughter is nine years old and we have only recently told her about her past diagnosis. My daughter was initially diagnosed with autism at 2 years old and no longer carries her diagnosis (now only ADHD). Almost a year ago we told her about her past and she was fine with it. It hasn't changed her view of herself or her self esteem. In fact she was happy to finally have some answers to why she was taking supplements and attending social skills classes. It's helped in other ways as well. Today, for instance, she was taking tennis lessons and one of the boys in her class is autistic. He was having a lot of aggression issues and stimming. He kept saying her name and over and over again and rhyming it. She got frustrated and I took her aside and reminded her that she used to be a lot like him and would sometimes do the same thing. She was then able to accept his behavior for what it was and realized that it nothing to do with her and it was just his way.

I asked her just now if she preferred if i had never told her about her early autism diagnosis. She said she is glad she knows because it's her truth. Nine year olds are pretty smart and can handle these things. I tend to think of it like sex education, if they are asking questions, then it is time to talk to them about it. If anything, your son will be thankful for how hard you and possibly your ex-husband worked to make him better. It's his medical history as well, at some point he will need to know. Keeping secrets have a way of backfiring.

Mouse
Posts: 63
Joined: Mon Jun 08, 2015 10:46 pm

Re: Ex Husband wants to tell Son he has autism

Postby Mouse » Sun Sep 27, 2015 3:46 pm

It's easier for a kid to take the news while they are young and still forming their self identity. It'll just be a part of who they are and they shouldn't see it any differently. Tell them when they are a teen and they may not take it so well. Teens don't like being lied too. Young kids can take it because they don't really know what it means.
It may also help them understand why they are taking supplements and having to stay away from certains foods. My son doesn't know he is autistic yet, but he knows foods with artificial flavors and colors gives him "bad energy," his words not mine.
Try having your husband schedule a meeting with a psychologist. You need to make the decision together as a family, even if you're divorced you are both your son's family and you two need to talk it out for his best interest.
You don't seem out of line for keeping it a secret, you have his best interest at heart. He may be a little different but no need to make him feel so.
Your husband isn't out of line either, the truth may hurt a little but it's also good not to lie to the ones you love.

autismhelp33
Posts: 2
Joined: Fri Sep 18, 2015 1:32 pm

Re: Ex Husband wants to tell Son he has autism

Postby autismhelp33 » Tue Sep 29, 2015 5:53 pm

We never medicate.
From the day that my son was born until he turned four years old, he would sleep in my bed with me. He had very bad sleeping habits, waking up every two hours and it was often very difficult to get him to fall back asleep. So every time he awoke, I wouldn’t turn the lights on to teach him that it’s time to stay asleep. It would take me one hour for me to rock him until he fell asleep again until his next two-hour cycle of sleep, since it seemed like he was waking up and going back to sleep every two hours. This happened until he was about 5 years old. Then he began to sleep all night long without my company.
After my son was first diagnosed by the regional center we enrolled him at Manhattan Beach preschool where he was in a full inclusion classroom and received intensive behavior intervention. Dr. B.J Freeman, who is considered an international authority in diagnosing, psychological assessment, treatment of children and adults with autism spectrum disorders collaborated with Dr. Batra who is a specialized developmental behavioral pediatrician. Together, they created benchmarks (goals measured over period to reach annual goal) these goals were specific to the deficits my son exhibited and to which goals took priority to target. In addition to his preschool IBI, he also received private ABA therapy at home 2 days a week. The preschool also had a social skills class that he attended for a year for, four days a week for one and half hours each class. The program was customized for each child's individual needs across the social skills curriculum. He was one of five other special needs children and two typical developing peers. The ABA therapies were conducted in playful ways so it was engaging to the peers
We also supplemented speech and OT with private sessions since the school was only giving him 30 minutes twice a week, which to me, felt like that barely scratching the surface.
While I was always on the go, on top of researching the best therapies to help my son with autism, I was also caring for my newborn son. Once I felt my second child was a little older and able to handle a forty-five minute drive to Seal Beach, I enrolled him at Autistic Partnership, which is a clinic I consider to be the Harvard University for Autistic children. He attended AP, three days a week, for four hours of group therapy. Shortly after we transferred my son to a private school with a low student to teacher ratio, which helped with his social deficits. For three consecutive summers, he would attend every day for four hours for therapy at Autistic Partnership. I think the most important factor was that I was personally attending all his therapies, even the ones that lasted 4 hours. I was much involved and learned how to continue to provide the same teaching techniques at home in order to give him that consistency. Whatever benchmarks he was learning and was taught that day; I brought it home and was able to teach and be involved in the care of my two children. Unfortunately, parents think that behavioral interventionists are responsible in fixing the child and parents don't realize you still have 20 hours remaining in the day at home which therapy needs to be continued in order to have a successful outcome. My son is now 9 years old, he will alwyas have autism, since he's been labeled and it's in the records, but he no longer displays any behaviors of autism. He is as typical as his peers. I will say, perhaps even better! Since his mannerism, speech and cognitive development, ability to control and calm himself down, his social interactions, make him shine amongst many of his peers. Example, a year ago our cat died and my kids and ex came to say goodbye since we knew that it would be a matter of hours till our cat died. My "autistic son" cried and cried which such emotion that we couldn't control ourselves and we cried with him. Our 2nd son was more who is one year younger, didn't understand the way to react to the loss of our kitty dying. True Autistic children, no matter how much you teach the skill of sympathy, they struggle with it. Something that my "autistic child" has no problem displaying. He also is extremely outgoing and no matter which setting we are in , like at the beach, he makes friends with them, no matter the social setting. My "autistic child' is very easy going and makes friends with everyone. It comes very naturally to him. He not shy in any way with approaching people. Personally, I don't mind if I were to tell him that at one point he was struggling with the diagnosis, but at age 9 I think it will cause harm. Since he was 5 years old, they prescribed him with eye glasses to keep his eyes strong as they were starting to cross a little. He was very aware of himself and he never wanted to wear them. As for ear plugs, he doesn't want to wear them because he doesn't want to be different. Or a swimming cap to protect him from the water, he would say '"no one else is wearing it, why do I have to?" He is very aware of going on. I think that telling him that he's different will cause more harm than good. It's not that being autistic is wrong, which he was, but again he no longer displays any signs. If he was tested today for autism, he would not pass that test.

Thank you so much for your input. I am passing this forum along to my ex and hope he comes to his senses that right now is not the time for my child to be labeled. I always believed the label is just for the parents to get the necessary treatment since without the label, you will not get funded nor helped. But I don't believe the label should be for a child. Most of the families that receive these labels, and their families, are struggling in significant ways. They need help, and sometimes lots of it. The issue is inextricably linked with the need to name the problem, a need comes in part of from both clinicians and parents who may feel more of a sense of control if what they are struggling with has a name, and also insurance companies who require a diagnosis for reimbursement of services. Psychiatric diagnosis in children, by definition, place the problem squarely in the child, when in fact it is almost always more complex that this. Genetic vulnerability and environment both have an important role to play.

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

Re: Ex Husband wants to tell Son he has autism

Postby Santosg » Wed Sep 30, 2015 11:57 pm

Thanks for sharing your history with us. It is wonderful to know that your son is able to have deep levels of empathy and compassion. In the end we only form truth connections with ourselves and others emotionally. The intellect is an important tool but pales in its power. I think it is very inspiring to hear how dedicated you were to helping ensure an optimal outcome for your son. I think that the biggest challenge that parents face is just not getting 'tired.' Not allowing themselves to be exhausted, to become resigned. You've got to keep pushing forward, large steps or small inches, each and every month.

Did you pursue any biomedical interventions? HBOT or another related therapy?

Best of luck you and your family. Congratulations and bravo, too!


Return to “Autism Support/Education/Technology”