Parenting a Teen or Preteen with Autism

Exhausted by angry autistic 10 year-old son

Feb 2006

My 10 year-old son who is special needs, obsessive compulsive, and autistic seems to go out of his way to make me angry at him. I had a baby over the summer and have an 8 year old son and because of my 10 year-old's behaviorial issues, I have to homeschool him. He is an extremely challenging child and has been since birth. He still has tantrums and will burst into a rage in public if he doesn't get his way. He's always mad at me for something and will tell me he hates me. When he gets his extreme fits for a toy or an outing, I try my best to be patient and walk away from him if I find my head wanting to explode into a headache. Lately, I have felt extremely tired and frustrated that upon my boiling point I start yelling him to stop, he'll start laughing and laughing, whicn only antagonizes the situation. I know I can't spank him because I'm afraid of my own strength and worry I may get carried away. My parents aren't available to give me a break as they're too dysfunctional. My in- laws aren't helpful as they are always judging me and my husband on our son's behavior, which is not a reflection of his parents. I feel utterly frustated, exhausted, and exasperated as he takes away so much of my energy, and guilty I can't give as much to my younger two sons. Sometimes I just wish I could walk away and never come back but he worries me so much as he has a hard time making friends and seems to be jealous of my middle son but thankfully not of the infant. I feel pulled in all directions. My husband is hands-on and will take him to the park, help with school work, take him to activities, just take him for a walk after dinner, and spend quality one on one time with him and the other boys, so he does what he can after his full time job, but I don't know if I'm just tired having just had a baby. Please no negative posts. Negativity doesn't help me. I have heard more than enough from family and close friends who simply don't know what it is to live with a child like this. Thank you. Sad Mom

Oh wow, you have your hands full! I wonder a few things; is your son getting appropriate therapy? Is there the possibility for family therapy with someone skilled with autism? Are you absolutely sure homeschooling is the right choice for your whole family right now? There must be good schools out there for autistic children, but I'm guessing they're all private. If you are sure about homeschooling, I would recommend something called Enki Education...www.enkieducation.org, which has been very popular with parents of children on the autistic spectrum because of the attention given to sensory integration. In addition it focuses on the parent-child relationship in a very positive and unique way. At this stage there is no fixed curriculum available for your son's age but a consultation with the director, Beth, may be extremeley helpful in addressing your concerns.

Now, last but NOT least, you need to focus on self-care. Space and time carved out for yourself, maybe meeting with parents of special needs children in a support group, or just taking time out to meet your own needs. You have taken on a huge job, and will burn out fast without support and care anon

My child has special needs and here is my advice to you. PLEASE get some of the help from public agencies that you are entitled to. First, send your child to public school immediately. This will give you a break and if he has behavioral problems at school this is the school's problem--NOT YOURS. I can't stress this enough. A special needs behavior problem that is happening at school is THE SCHOOL's problem--NOT YOURS. They have to do what they need to do to control his behavior so that he and the children around him can learn. He is entitled to a free and appropriate education and you should not have to home school him because of his behavior issues. If the local school won't work for him then they need to send him somewhere else that will work like a special day class or a place like Alameda Children's Center. Depending on your school district the school psychologist or district behaviorist may be able to come to your home to help with behavior problems if they interfere with him doing homework. I doubt that your son is really ''autistic'' since so many kids with problems these days are given that label and it doesn't mean much anymore. (Besides you mention that he is jealous and that he does make friends.) But if he really is ''autistic'' you may be able to qualify for additional help from Regional Services including a behaviorist and some small amount of money for respite care. You are doing an enourmous amount of work right now--I can't even imagine trying to do what you are doing! Please give yourself a break by calling your local school district's special ed. department and starting the whole evaluation and placement process. It will be good for your son to be in school with other kids. Keep after your school district--it is the federal law that your child not be excluded from education due to special needs.

Also, maybe you can see a specialist who can help you set up a behavior plan at home so that you can try and deal with your son's behavior in a systematic manner. I know this is super hard! Sometimes following your instincts about how angy you feel isn't the worst thing to do--different kids need different amounts of imput to get the point. another special needs mom

I know how it feels to have a child who's like this. I often feel like walking away too (and might if I didn't have other children). You need help, especially if he's with you 24/7. Where I live (near Fremont), we were able to find peer counselors -- younger people who are getting their degrees and who are willing to spend time with our son for much less than the usual therapist rate. If this doesn't work, run him -- hire young adults to take him for bike rides, hikes in Tilden, bowling, etc. We've found the more tired our son is, the easier our evenings are. Have you checked out special schools -- Star Acadmey in Marin for example so you have some time away from him? This is a frustrating, exhausting situation and I really feel for you. Another Mom of Angry Child

The situation you describe must be incredibly stressful. With your son's symptoms there is no way that this is just ''bad'' parenting! You need a break and you need support. Here are a few thoughts. First, perhaps you should reconsider the home schooling. Your school district has a responsibility to provide schooling for your son that takes into account his special needs.

Insist on an evaluation, and if necessary, pay for a second opinion from an educational psychologist. Are you aware of any private schools or boarding programs that could help your son?

If this is the only way to give him adequate schooling, then the school district must pay for it. (For example, our school district has paid for students to go to the RASKOB institute in Oakland). It takes a lot of persistence, but it may be worth the effort. Second, see if you can find some books on raising an autistic child that you can share with your in-laws. Talk with them frankly about how difficult it is for you and your other children, and see if you can arrange some type of respite time with them. If they cannot provide help with your oldest son themselves (after all, he sounds very difficult), perhaps they or your family could chip in to provide for a helper who comes in occasionally for your son, or they could take the other two, to give them a break. (My son went through explosive rages for several years at about this age, and I would take his toddler brother, and his sister if she would go, over to the neighbors until he was back under control--embarrasing, maybe, but it wasn't like they didn't hear what was going on, and they were very supportive, not judgmental). I found having a diagnosis was very helpful with my family and friends, so educate them with books, documentaries, web sites--whatever you have at hand.

There is an organization headquartered in Berkeley--DREDF http://www.dredf.org/, that can provide a lot of info on the rights of parents of kids with disibilities (which is what your son has). I wish you strength, patience, and luck in dealing with this Anonymous

I hear you, and you have my support. Sorry I don't have any more specific advice than that, other than to say you sound like you're doing the best you can. Is it possible to get connected with a support group for parents of special needs and/or autistic kids, or find some resources for respite care? You need to take care of yourself, too Anon

Hello, Sorry to hear you are having such a rough time. I volunteered at the Son-Rise Institute in Sheffield, MA. They have an amazing family program for working with Autistic children. Check out their family programs. For info check out www.option.org Also, you might want to consider checking out the Landmark Forum-its a personal development and empowerment program that is really wonderful. www.landmarkeducation.com Best to you, David David

Growing up, I was the oldest and the only girl. My middle brother was VERY angry and while not autistic, I think in today's age he would have been tagged with some learning disability. My mom and dad did family therapy with him for a few years, from 8 to about 12. While it wasn't anything miraculous, it helped my very blue collar (and in my dad's case, no high school diploma) parents get a better grip on different ways to deal with him. Fast forward t m y youngest brother, whip smart and a different kind of angry, more internal and crafty, but stubborn. He and my mom started to lock horns when he was about 13 and because of my mother's anger and frustrations, by the time he was 14 they were having full-on physical fights - my brother kicked her in the chest once as she ran up to him laying on the couch, she punched him in the face hard while wearing rings with hard stones in them. I could go on.

School was complaining about him, other parents... so he entered therapy as well. Therapist asked that my mom and dad also go, but my mom got uncomfortable after a few sessions of seeing that she would need to shoulder some blame and she refused to keep going. At that point, the therapist suggested that under the circumstances, it would be best if as soon ans my brother started pushing my mom's buttons she would call my dad up and then walk away. If he was anywhere but work, he needed to drop everything and come home and deal with it. (I should add in here that my dad was very hands off when I was my brother's age - my mom was working FT and keeping house, going to PTA meetings, being a housewife and working and my dad was for way too long living the life of the 50s dad who worked, came home, cracked open a beer and watched TV until dinner was ready). So they tried that and to this day my mother said it saved her marriage, her sanity, AND her relationship with my youngest brother. For years, they barely dealt with each other beyond pushing buttons a little and then my dad stepping in. And then one day, it seemed like my brother snapped out of it and by then, after years of therapy, my dad finally stepped up in his own ways, and today, with her children 38, 35, and 32, you'd have never guessed how incredibly screwed up our house was (unless you looked really closely ;) )

In any case, I am not sure if ANY of this might help, but I wanted to give you hope. What helped my mom was being somewhat absolved of dealing with my brother. Maybe you need a long-term break of sorts anon

Dear Sad Mom, First let me say, my heart really goes out to you. You are dealing with a huge amount at once (3 small kids alone is challenging enough, and then to add to the mix a child with very demanding special needs) while you are just trying to get through the crazy making post-partum period.I have two sons, the older (7) has special needs (mostly social communication issues) but he is, thankfully, also an extremely loving and upbeat guy. Even so, I couldn't do it alone! And you should not try to! I think it is a big mistake to homeschool this child.

If he has OCD and autism, these are serious issues, and you and he need as much good, professional, caring help as you can get. He deserves to have the support of good special education teachers, counselors, aides and other professionals provided by the public school and (if you can at all swing it) as much private support (therapists, babysitters) as you can afford.

This is not only for your benefit (though I believe, from my own experience, that it would go a long way towards helping you feel a lot less alone and desperate) but for his as well. He truly needs the help of people who know how to deal with his problems, and who can steer him towards confidence and success. He might very well be a lot less angry and tempermental if he had this kind of support; He might also behave better towards you if he had more time away from you. I think that you also could benefit from having time and space away from him, AND from talking to a sympathetic counselor who could help you deal with your (justifiable) frustrations and angers, and who could help you devise a plan for creating a special village to help you raise your children, particularly your eldest. Believe me, I know it is not easy, but I implore you to get some really good professional help for your son and for you. Start with an IEP in your school district (call up the office and they will tell you how to get started). Please get a babysitter right away to give yourself some breathing room so that you can start moving towards getting the help you and he need! Please email with questions/for refs jerechter [at] yahoo.com

I feel for you. My son is also challenging, and impacts our lives a lot. Things that help me are humour (is your son able to laugh at himself?), getting breaks (it's worth paying for), and most of all taking care of myself. The ways I do that are exercise; getting regular bodywork that incorporates the mind as well; and a spiritual practice and community. For me that has involved meditation (James Baraz has a wonderful beginning class in Berkeley on the Spirit Rock website)and 12-step programs, which are very much about giving yourself space, letting go.

Regular time that I take care of myself has been essential, and it's so worth the effort and possible expense. Knowing my own limits, and replenishing myself. It is very hard to have a challenging child, and people with easy kids have no idea how hard it is. But there are things you can do. Antidepressants have also helped me a great deal. You may also want to consider therapy for your son with someone knowledgeable about these issues.I wish you the best anon

Sad mom, I know EXACTLY what you are experiencing: my 12-year-old daughter is obsessive-compulsive. She has been ''challenging'' literally since birth. The tantrums made me flash on ''The Exorcist''! She was uncontrollable when she'd get into a fit. NO ONE UNDERSTOOD what we were going through. My advice: if your son has OCD(verified by examination by a qualified psychiatrist) and you are not medication-aversive, run, don't walk, to a pediatric psychiatrist and try medication. My daughter was diagnosed at eight, but it wasn't until she was 10 or so that the rituals began to look like the textbook variety of OCD. Prior to that, I think the tantrums and anger (yes, she would yell and scream about how much she hated me) stemmed from her complete inability to control the things she *needed* to control.

Obviously, a child is in control of very little. We dropped out of any social life, never took her out to restaurants, didn't press for new playmates or playdates. I didn't realize just how far it had gone until her ''normal'' little brother was born, and he wasn't like her at all! I reached the breaking point last January with my daughter, after cognitive-behavioral therapy didn't work, and her rituals started to consume hours of MY time as well as hers. We got her on sertraline (brandname Zoloft) and inched up the dosage over the course of several months and ...

although it's not 100%, just imagine losing maybe 70 to 80% of the rages, the tantrums, the anger and frustration! Rather than feeling sad that she's on medication, I just think about the chemical imbalance that causes the erratic behavior and feel grateful that there's a way to give her some relief. I would love to tell you how she feels and how this affects her, but she doesn't talk about her feelings. She is grateful for the medication, and I actually LIKE being with her now that she isn't tormented by needs that she can't fulfill. I know what it feels like to just want to walk away and not look back. I can't share my name with you because I am not willing for other parents on the listserve to know my child's ''secret'' - it's hers to tell or not, and I must respect that. My heart is with you and your family. This is a painful disorder for all of you. Sad mom, too

Dear Sad Mom, I really hear you. What you're dealing with is a lot, and I just want you to know that you're doing a great job in a VERY challenging situation. Blessings to you and your family. I don't personally have experience with a special needs child with your son's challenges, but I have homeschooled and I know how much it takes even with a normally, spirited, energetic, willful and sometimes, ''full of attitude'' child! Even with a helpful partner, it sounds like you still need more support, regularly scheduled time to yourself for rest, and recouperation of your own spirit, AND some healing. I can only point you in a direction I have personally taken and you can choose whether it works for you or not. So here goes... I personally have done lots of ''spiritual healing'' work and have been a student of many modalities over the years. I now practice two forms of energy work, a couple which may be of interest for you personally, and one which may be of particular relevance for your son's' condition.

I would gently suggest you talk with David Demeray of BioGenesis. His family has a wonderful set of ''tools'' which are working very effectively for many people. The great thing is, anyone can use the tools, they're very simple and easy to use. If you speak with David or his mother Linda, I would suggest you ask them about the boy who recovered from very disabling OCD. It may give you hope and a resource, not only for healing for your son, but for your entire family. There is much assistance and guidance for all of us if we open up to it. Thank you for the courage to expose your struggle and ask for help - that is always the first step. I will post another response with David's contact info, (the website is www.BioGenesis.us), however, I don't have it with me right now. In the meantime, please feel free to call me or email me and I can get the info to you that way. Take care of yourself and thank you for your courage in sharing your struggle - you are a very patient and caring mom whose family is fortunate to have you loving them the way you do. Bless you Laura

Even with the social skill level of your child, he can learn to respect you, be responsible and fun to be with. You may wish to call Virginia Keeler-Wolf to discuss your son (510-339-9363). The other support that may help you is reading Nancy Thomas' book, WHEN LOVE IS NOT ENOUGH. She discusses in detail how to work with children who have behavioral issues. Her first instruction is: Take care of yourself! And she gives you ideas about accomplishing that. Certainly your hormones after birth may contribute to overwhelm now, more than at other times. I would encourage you to take cod liver oil or fish oil to assuage any postpartum depression. Further, breast fed babies of moms who take DHA/EPA (fish oils) have significantly higher IQs.

We began working with Virginia with our son, who also has similar issues, and the change over the past few months has been remarkable. I hope this will also work for you and your son. Been there too

I read your post and had to respond right away. I feel for you and your situation! Although I don't know what it's like from a parenting perspective, I worked with kids with autism and know how incredibly challenging-nonstop!-they can be. Despite what some claim, I do not believe that autism ever ''goes away,'' and to me it's the most challenging disability you could be faced with as a parent. Clearly you need help and support ASAP. You mentioned how much your family is able to help-or not, but I'm wondering what other sources of support you've investigated.

Were you ever involved with the Regional Center or the state program for older kids with disabilities? I'd think they could connect you with other parents facing the same issues that you could at least commiserate and share information and support with; autism has become so prevalent in CA recently that you have lots of company. It sounds like the homeschooling-having your son home 24/7-is a source of great stress. Trying to provide for all of his needs-while also taking care of your other kids-is just too much. Do you ''have'' to homeschool him? He sounds like a prime candidate for services either in a public, private or ''special'' school, paid for by your local school district. I'm also (slightly) aware of an organization called BIA that does home behavior therapy/education with kids with autism. There's also an advocacy organization-and I hope someone will write in with the name-that helps parents advocate with school systems so that the child's rights under ADA are observed and needed services are made available. You'd also be eligible for some respite care, I would imagine-someone trained who could watch your son periodically. I could see how you wouldn't have time and space to investigate these things, but please do what you can, or ask a friend to help-so that you get the kind of support and resources that will make a difference for you and your family for the long-term. Feel free to email me if I can help you track down some resources. jkh

I work with children who have autism and the behavior you describe is not uncommon. I don't think there is much you can do on your own to fix this. Do you belong to any parent support groups for families with autism? They could be a lot of help and a great resource for networking. An expensive, but pretty effective option would be to find a private behavioral consultant who could design and implement a behavior program for your family. I'm not talking about the general behavior analysis that school/regional center does but a private Nanny 911 style of program. Families who have had this done have had good success.

Unfortunately, your son will only get stronger and bigger and you need to think about keeping him safe, which is why an expensive consultation may be worth it in the long run. Good luck anon

Hi, I work with many autistic children. The frustrations you are communicating are valid. When you live with a child with special needs every day, then you understand. I had great luck with the sensory learning program to help with the rage of my own son, among many other things. If you would like some more information please just e-mail me. How your son handles his sensory input really can help shape his behavior. I wish you all the best, Take care, Bryan

Dear Mom, I am also the mother of a special needs son, and I spent several years trying different private schools and homeschooling before I gave up, moved to a good school district and put my son in public school where he received a ton of services. The extra support took the strain off our relationship and he has improved immeasurably. Even if you don't take this route, you are eligible for services through Regional Center (like respite care, which it sounds like you could certainly use). Having an autistic child is too stressful to manage alone and autism is responsive to intervention. You say you come from a family that is dysfunctional, and your isolation-- trying to go it alone--can be a symptom and a perpetuation of that dysfunction. Please get the help you all need. Glad I Surrendered