Troubled Father

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We are in the process of my 3 and a half year old son being diagnosed with ASD. His Pre-K school, school Psychocologist, Teacher, Speech and Occupational Therapist have all done their evaluation and an Autism program at our local children's hospital is going to treat him after we get our diagnoses. I have done quite a bit of research on my own and everyone knows the road we are headed on. He is very smart but completely non-verbal, in addition to other typical ASD signs such as "stimming", vocalizing and arm movements etc... Fortunately we have a great group of people assembled to help him and I am thankful for the blessing that he is and the blessings that we have a great team in place. My first of many questions and the one that I am most troubled about may seem trivial to many people on this forum and I know many are dealing with far more serious concerns, so I apologize in advance. What is so troubling for me and one that hasn't been addressed in all my research is the following. My son is very, very happy throughout his entire day and has been for his entire life. Through love and nurturing, my son makes eye contact with everyone but especially my wife, mother in law and myself. When he makes eye contact, he constantly smiles. He loves playing "Ring Around the Rosies" with us and he even initiates it. He has started mimicking our laughter and he loves it because it makes us laugh even harder. There are some other examples that I can give but I hope that you can then understand what my question is. That as we are embarking on the intensive intervention and therapies that we are embarking on shortly, is that going to make him unhappy? I know that so much of the therapies are focused on him developing his communication and getting him to be as "high functioning" as possible but is it going to be at the cost of his happiness? Of course I want him to be all that he wants to be in his future and I know how important early intervention is but is it going to make him unhappy a lot of the time? He has never had a "meltdown" and because he has been in such a nurturing environment, the lack of verbal communication has not caused him any unhappiness and I am terribly frightened that his "development" is going to come at the cost of him no longer being such a happy little boy. If someone can please give me some guidance in this matter because although it may sound trivial to those that are dealing with much more serious concerns and my heart goes out to them, ultimately his long term and even short term happiness is, or should be of paramount importance. If those that have or had their children go through these types of therapies can address this, I will be eternally grateful.

First off I want to say you sound like a great dad for an autistic kid. You remind me of my dad and him always being so caring and devoted has been very beneficial to my development. I started out with all the occ therapy stuff when I was 3 also. I don't recall it making me unhappy when I was little. It was just stuff to do and I liked doing stuff. I would say if he has been ok with what he's been through so far with being evaluated, I figure he should be ok with continuing. The only thing I have ever disliked is speech therapy, but that's more because of my apraxia of speech making it extra difficult.

This is such a dilemma. You want your son to get better, and to "have a future"--but you also want him to be happy.

Here's hoping that the therapy administered is child-centered and non-aversive, with the emphasis on play and positive interactions. Have you had some chats with the therapists yet?

I don't see him needing something like Applied Behavioral Analysis anyway--he seem to have the "basics" of socialization down pat.

I absolutely agree that a person's happiness is the paramount objective.

Thank you so much for asking this! I'll admit that it brings a tear to my eye. That's one question that was never asked about me and my "program" when I was a kid. I'm not alone in this. There are significant numbers of adults on the spectrum who have post-traumatic stress issues from the interventions we were given as children.

Part of my way of coming to terms with my childhood was actually going into special education as a professional for a while, so I think I can lend some insight from that angle too.

There are various different styles of therapy. Some of them are more conducive to the child's emotional well being than others. In general, ABA is the worst of the worst. But hold on before you refuse any ABA at all. Because its the only therapy approved by insurance agencies, there are lots of therapist who do "ABA" without actually holding to the rules of ABA, if you get my meaning. You have to ask into it a little more. Traditional ABA has components that are designed to "break" your child like a wild pony, like long hours, 100% compliance requirements, and a refusal to give breaks. So, you have to talk to your therapists about exactly what they intend to do in a typical session. Because they may be saying "ABA" without meaning ABA.

It will make a HUGE difference if you are very open and friendly with your team of therapists. Tell them that your son's happiness and well being are of primary importance to you. Teachers and therapists are human. They have a lot of pressure to get results first, and often fall to being harsh with children so that they get those results and therefor look like a success. If you let them know that you are most interested in your child being happy, this really lets them off the hook. It can relax everyone in the room. As a teacher, I had a few parents like this and they were really a joy to work with. It made it nice to work with their kid, too. We felt like a team, not like we were on trial for not doing enough by their kid. Your special education team deals with dozens of unhappy, anxious, and demanding parents every day. Meeting with one who wants to cooperate and appreciate our work is special. I can still remember the kids who's parent's were fun to work with. Its been over 10 years. I remember their kids, but the friendly parents' faces have faded from memory. I think that's telling. With the angry parents, I remember the parents, not the kids.

Things that you will likely want to avoid in order to maintain your son's emotional well being through this:

- working too many hours. A lot of ABA suggest 40 hours a week! On top of other therapies!! ! Some people do the 40 hours on top of school! That's too long for a 3 year old. Even the 20 hours that Autism Speaks is gunnign for is too much! Grown-ups can't handle that much time at work. What makes us think a 3 year old baby can do so?

- using adversives. Taking away things that matter to your son. Doing anything that hurts. Keeping things he needs away from him in order to make him speak. (*The best behavior modification happens when their is something at stake that is desirable, but not so intensely desirable that it causes more anxiety. I'm really just beginning to understand this about myself. If I need something too much, trying to get it also causes anxiety, which is likely to cause freezing. You need to find what he wants just enough to want it but not NEED it.)

- training him to not stim. He needs to stim to feel well. help him learn how to stim smarter. Don't take it away.

- ignoring his interests, even if you don't think they are age appropriate or "normal." If your little boy likes flowers, let him collect flowers. If your 18 year old watches Barney, let him watch Barney. You can talk about when and where, but we all need time to do what comes naturally in life.

- letting your child witness your grief around his disability. Telling him that you worry about his future. Telling him you think he'll never manage to reach a certain goal. People are weird. They think just because someone can't talk, they can't hear either. Its not true. A lot of autistic kids are absorbing EVERYTHING. They hear and comprehend. Always be aware of this while he's in the room. If you need to cry or to be angry at God, leave the room and do it alone or with someone who can listen. Get a shrink if you need it. The scariest moment of my young life was watching my mother cry because of my diagnosis. I had no idea anything was wrong until I saw her cry about me. It was a HUGE moment in my development - a turning point. It didn't have to be that way. She should have kept that grown-up fear stuff for the grown-ups. I wasn't able to process it and it put a GIANT chip on my shoulder that I still work on letting go.

I think if you can convey excitement around what he's doing in school or in his therapies, that creates an expectation of it all being good rather than "something you have to do." You can address privately with the teacher how you really feel about it, any reservations, etc., but try not to do so around your son.

Another thing that I always recommend is coming and observing the classroom (or therapy session) every now and then, for independent information about what really goes on. Anyone who refuses you that access is someone I would feel apprehensive about. This is probably less appropriate by the teens, but for children and especially nonverbal children, it's essential.

The people who posted before me also had great tips. Good luck to you and your boy!

It is often hard, especially for men of my generation to reach out for help. EzraS, kraftiekortie, somanyspoons and BeaArthur, you have all made me thankful that I did reach out and join this forum, in addition to bringing tears to MY eyes with your obvious care and concern. It is clear by your comments that you understand EXACTLY what I meant in my convoluted post. I will answer your questions and comments to the best of my ability.

EzraS-Thank you for your kind words and it does sound like you and your Dad have a very similar relationship to my son and I. Your comments definitely make me feel that maybe I am on the right track. I had a meeting with the school Psychologist, Special Ed. Coordinator, Teacher, Occupational Therapist and Speech Therapist. The school Psychologist is wonderful and really has become a great advocate for my son in her own right. During the meeting I laid out some parameters with regard to his therapies going forward. I made it clear that no request would be made of him until they establish a trusting bond with him and that no strategies would be undertaken without my approval. We are limiting his time for therapy and school and plan to slowly increase that as tolerated. We also plan to use those things that he enjoys doing and try to incorporate them into his therapies. Let me know what other things may be useful to get him on the same path that has led you where you are because it sounds that is the path that I would love for my son.

kraftiekortie-You definitely understand EXACTLY what my dilemma is. To help him "be all he can be" without sacrificing his happiness and childhood which, in my humble opinion, should be, far and away, #1 in concerns going forward. I have met with the therapists and made clear my concerns. I think we have established good paramters but please let me know if you think something else should be added. I am glad that I know your feelings about ABA with regard to my son. I do think he has the basics and hopefully his socialization skills continue to improve.

somanyspoons-God bless you. I will try not to pester you too much in the future but your experience from both sides of this journey is an immeasurable resource and one that I am very thankful to encounter. Firstly, we discussed ABA in our various meetings and I had EXACTLY the same apprehensions and we discussed those things that you mention. They don't use ABA per se, although they do some of the more benign ABA type of approaches. Meaning, rewarding positive behaviors with positive reinforcement. Delaying but not withholding rewards completely to try to get some non-pressurized verbal responses etc.. Let me know what type of ABA, besides the ones you mentioned in your previous post, that I should want and which ones should I not allow? I'm glad that you detailed the idea of using things that he wants but not necessarily needs as the ones that they or we delay. I am going to immediately make that known and it makes perfect sense the way you put it to incorporate that going forward as soon as possible. I am trying to build those positive relationships that you mention. I have run into some great luck in that the School Psychologist is amazing and in the short time that she has known us, we have built a great foundation of trust and she has become a tremendous advocate for my son. Same can be said for the Special Ed Director. She was a good acquaintance beforehand which has helped and she is definitely involved to our benefit. Really like his teacher. She is great with kids and committed to building a bond with my son. My biggest concern and another area where I need your guidance is that it seems to me that his Speech and Occupational Therapist are very result oriented and I fear that this is an area that may strain that positive relationship. I tried to make it clear that, while I understood that at times it would be to my son's benefit to step out of his "comfort zone" to further his development, it could not be detrimental to his emotional well-being and happiness. If you can, not that I haven't imposed enough , let me know what might be the best way to reiterate that strategy to them going forward, specifically regarding possible strategies used and/or overall itemized structure going forward. I am very glad that you wrote about limiting the amount of time spent on therapies going forward. That has been one of my biggest concerns. What do you think would be the "happy medium" of time a week? He is scheduled to be at school 10 hours a week, including the time spent with the Occupational and Speech Therapist. What weekly time limit should I set on the post school therapies through the ASD program at our local children's hospital? I know that without knowing my son, you can't give me something "set in stone" but if you can give me an approximation of the range that you feel is best? We are definitely trying to incorporate his interests as much as possible. We are even going to use his love of playing "Ring Around the Rosies" (he even initiates that by himself by grabbing my hand and his mother's hand and going into the living room, HUGE step) to help him bond with the therapy team. Also using interest as rewards. Do you think that's the best route to incorporate those interests or can that backfire by taking something that he enjoys and placing a stressful connotation? Lastly (FINALLY, sorry for the length ), I will keep in mind to always be positive around him and not allow him to see our worries and fears. You are right, he has enough on his plate without dealing with our concerns.

BeaArthur-BTW love the name! Thank you for the advice and it is one that I am definitely going to be cognizant of making it fun to do the therapy sessions and not making it into a chore or sentence for him. I did tell tell the "team" that I wanted to be actively involved as much as possible. I will make sure that continues to be the case. Thank you and Thank you all.

My parents have expressed it at times being a dilemma for them in seeing to my special needs, keeping my limits in mind and keeping me from bad experiences, while at the same time being proactive in pushing my development as far as possible. Like not wanting to spoil me but also wanting me to be happy. I am going to be 16 tomorrow and I am really glad they have been so proactive in my development. It's possible that I will always need to be looked after and in that sense they could have just let me be. But at least they have given me a chance. And I probably would not be here writing this if they had not pushed/encouraged me. I definitely do not feel like I was neglected in that way. It hasn't always been a walk in the park, especially speech therapy, but I'm really glad I was put through it. It has made me stronger.

Thank you Ezra for your reply. I hope I find that right balance, now and in the future that your parents obviously have. I wish you a very happy birthday and I hope that you always continue on the great path that you are on. God Bless!

I would say the unhappiness he might experience as an adult would be much worse, I would definitely try a proactive approach rather than the hands off one as that is what my parents did and I think it screwed me up. Maybe I'm just projecting but you have to push your child and initiate things, I never did anything as a kid since I never had any initiative to want to do those things and quite frankly it was more convenient for my hardworking parents if I didn't. You sound like a good father and the school sounds much more proactive than mine so hopefully there is a better result.

At least you're interested in your son's well-being. I didn't even know about the spectrum until 5 years ago, when I was diagnosed. Where I grew up, and where I now currently live (on the edge of PA Dutch country), the populous is very black and white thinking, especially among the older folks. To them (and, if they were still alive, my parents), psychology is nothing more than bullsh!t. Spare the rod, and spoil the child is the only standard they understand, and use it across the entire spectrum, NT or otherwise. They would welcome ABA, since they believed the only way to raise a child is to break them like you would break a horse, so they become 100% compliant to their will, without question.

It also didn't help that my parents come from dysfunctional homes, where little, if any love was shown or expressed. I won't go into the details, as I posted those details a few years ago on a different thread.

Thank you Jacoby and Meitersinger for your replies and I am very sorry for the lack of support that you experienced. I can't even imagine how difficult that would be for someone on the Spectrum. A difficult childhood is hard to overcome for anyone, including those that are Neuro-Typical, but it breaks my heart to imagine my son or anyone that is on the Spectrum to have to deal with those difficulties in addition to a lack of support and/or love. It sounds like both of your situations were quite different, although similar in that neither was in the best environment for your development, emotionally or neurologically. Since my realization of what my son is going to have to deal with for the rest of his life, my biggest fear is that my time on earth is limited and what will his life be when I'm gone? My oldest son is NT and an amazing 26 year old that I am blessed to have and we have already had a conversation about when my time is up, I need to know that my little boy will always be protected and supported. My wife is younger than I am and in good health but my biggest fear now is what both of you have had to endure, a lifetime of dealing with this affliction without the love and support that you both deserved and are still deserving. I hope neither of you will think this is callous of me, but it does give me some solace that, while I am sure that both of you are still dealing with a lot and will have to deal with a lot for the rest of your lives, both of you have overcome to a point difficult circumstances and that my son can also have a GREAT deal of inner strength like both of you obviously have that will make his future not as tenuous or fragile that my overwhelming fears make me feel it can be. I hope that makes sense. I don't like pushing my beliefs on others but God Bless both of you.

You know when your baby is tired. The idea is to not push him past his limits. This is going to change rapidly in the next two years, before he hits typical kindergarten years. There's really no way to say "this much and no more" without having that change in the next few months. Kids this age grow so quickly. You'll be surprised how hardy he'll be by the time he reaches 5. If it were my kid, I would start up the school year with the ten hours and slowly introduce the additional few hours from the hospital after a month or so. You just have to keep paying attention to him.

Being that he's already playing ring around rosy, and he's willing to look at you and connect with you, I wouldn't be surprised at all to hear that he turns into one of these kids who just starts to talk fluently at one point - usually between 4-7 years old. Then you won't be able to shut him up. Just remember how you feel now while he's not talking at all so you can take it all in stride.

As for the few not so helpful therapists - you've got a choice to make. You have to decide if you want things to be good enough, or if you want to push for perfect. If you push for perfect, you will be one of those nightmare parents that everyone holds their breath around. Of course, if you feel for a minute that your kiddo is being abused, you need to stop it right away. But that's not what I'm talking about. I'm talking about the good-enough-but-not-really-what-you-would-prefer therapist. These people are going to be a part of your kid's team. They are everywhere. And here's the weird thing - your opinion on who is in this category will vary from the other parents. Somewhere right now, there's a parent who thinks your speech teacher is the best, and that school counselor kind of sucks. So, you work with the not-so-great therapist like you would any other respected professional. You express your needs, you ask for reassurance that they won't violate your family's values. Most of all you express gratitude for their willingness to give of their time and you appreciate the places where they are skilled at their work. Being like this isn't just submissive. You can actually change how they work with your kid by this. You want them to know that you are attentive and appreciative. Their work is being noted, and you are paying attention, and that you are grateful for their efforts. Its the same skill as being a good boss. Employees need you to express an awareness of both their efforts and their results, and they need enough leeway to do what they do without being micro-managed.

As for what methods to suggest, I'm afraid my knowledge is ten years out of date for that. The names of methods keep changing, even though its the same old cycle of ideas. I think you've instinctively already got the point though. Its not about the name of the therapy. Its about the individual therapist/teacher's ability to connect with your kid. You can't force that and you can't learn about it from a book. It is both a skill that teachers develop and a gift that some people just have for working with kids. I would ask your teachers/therapist what methods they favor in addition to the ubiquitous ABA therapy. Then you can research it and have a real conversation with them about what you like about that method and what your concerns are. Ask, don't tell. They will likely have some good, professional answers for you.

somanyspoons I am so thankful that I encountered you on this forum. I can't express in words how grateful I am for your guidance. I will definitely heed your strategy and advice. With so much research that I have done and I haven't run across someone like yourself that has been on both sides of this crucial issue and that has your insight. I think the toughest part for me is that I want everything to be so "perfect" for him and his happiness and his development also. You have relieved that pressure for me by making me understand that it doesn't necessarily have to be perfect every second of every day and I can not only formulate a plan but be flexible in its execution for him to progress and still be that happy little boy. You are a godsend and I won't pester you but I may in the future look to you for some further guidance. Thanks again, Carlos

Have you seen the Atlantic article on this?

It doesn't give any easy answers for parents, but does have a lot of clear thinking about the issues.

My kids were never nonverbal and did not have such marked issues before the sensory and social demands of school, but they were always joyful when they were young, too. It was wonderful seeing them wake up from happy dreams with those huge smiles and reading your post brought that back to me.

Now they are getting ready to enter high school and often profoundly unhappy and anxious. It seems like school is the major source of unhappiness in their lives. I sometimes wonder if I had been very rich and been able to hire tutors to homeschool them, might that early joyousness have been less bruised by life? It's impossible to know, of course.

What can a parent do but try your best and stay focused on their well being and letting them know the love you have for them?

somanyspoons advice is some of the best I have seen anywhere.

Thank you Chronos and Adamantium for your advice and replies. It's hard as a parent trying to strike the perfect balance between what's needed for his future development with what's best for his happiness. I, of course, worried with all my kids and try and tried every day to be the best parent I can be but with my little one having ASD, it feels like the stakes are so much higher that it causes me great anxiety because I only get one chance to make it as perfect as possible for him. I think because I'm older and not in great health, the idea that one day I might be gone and I won't be there for him is making it worse. I don't have anything immediately life threatening or anything but I just feel that I have to get it so "perfectly right" for him so if anything happens, he'll be ready to face the world. I will definitely read that Atlantic article and as I have said previously, the words of support that I have received on this forum have helped greatly, so thanks again.