HELP FOR PARENTS OF CHILDREN WITH ASPERGER'S & HIGH-FUNCTIONING AUTISM

Education and Counseling for Individuals Affected by Autism Spectrum Disorders

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Asperger's plus Oppositional Defiant Disorder: The Greatest Parenting Challenge

“We have finally had a diagnosis for Asperger’s (high functioning) and ODD after 6 and a half years of hell… my son is now 14 and apparently there is no help available!! He has a diagnosis and his statement will be drawn up for educational purposes, but where does that leave us as a family...he is so difficult to take anywhere… our house has been slowly getting destroyed by temper tantrums… so far every door needs replacing and the walls are covered in holes. I have a 9 yr old daughter with epilepsy who is really beginning to dislike being at home… it seems every day our house is filled with arguments over petty things which often lead to violent outbursts… there is no medication for him apparently, but I as a mother cannot cope much longer… this is changing me as a person, I'm finding I'm snappy and irritable and finding it hard to just get on with everyday …things that seemed so easy before... any suggestions on where what or who to go to for help!?”

For moms and dads of kids with Asperger’s (AS) and High-Functioning Autism (HFA), coping with violent and aggressive behavior is perhaps the most difficult challenge. Aggressive behavior in the AS or HFA youngster occurs for a reason, just as it would with any other youngster. No kid ever just "acts out" for no apparent reason. The key is in the words "apparent reason" – there is ALWAYS a reason, but the major challenge for the parent is figuring out what that reason is.

Inappropriate behavior, whether mild or severe, generally occurs in order to:
  • Avoid something (e.g., the youngster may become aggressive and shout before getting on the school bus because he wants to avoid going to school)
  • Because of pain (e.g., the youngster may show a range of challenging behaviors to his mom or dad because he is in physical pain, such as having headache)
  • Fulfill a sensory need (e.g., the youngster may lash out or shout in the classroom if it is too noisy, busy, bright, hot or smelly)
  • Get something (e.g., he may lash out at another youngster because he wants to get the toy that the other child is playing with)

Thus, the first step in reducing or eliminating this behavior is to determine the need that it fulfills by looking at the four categories above.

The second step is to teach your child a replacement behavior, which he can use to communicate what he wants or doesn't want. It may even involve using some of his obsessive or self-stimulating behaviors (e.g., hand-flapping, rocking, pacing, etc.) as a replacement behavior. This is far less intrusive to others than aggressive behaviors, but still serves the same purpose. You can also encourage your son to express his feelings or negotiate verbally. Alternatively, he can communicate through other methods such as emotion cards, drawings, using symbols, or "talking" through a puppet. You know your youngster best, so you need to experiment and see what works best.

This process takes time and initially, depending on the behavior, you may not have time. If the behavior is severe, then you need to immediately remove your son from whatever situation he is in at the time. Simply insisting that he stop the behavior and participate in whatever is occurring will not work unless you remove him from the situation first.

Also, maintaining your son's routine will go a long way towards reducing the need for inappropriate or aggressive behavior in the first place. Routine is a great source of stability and comfort for kids on the autism spectrum.

In summary, try to identify the real cause of the behavior, and teach your son to communicate the real cause of the behavior to you in a less harmful manner. A good therapist can be a big help to you here. So don’t be afraid to ask for help with this issue.

How to Prevent Meltdowns and Tantrums in Children on the Autism Spectrum

COMMENTS:

•    Anonymous said…At 12, our son was as the 14 y.o. described in the initial question. We sought professional help and ended up hospitalizing him. Meds did help him with the anxiety and depression, and to control his outbursts, but he needed to be in the hospital where they could observe him first hand while determining the effects of the meds. You must take the steps to get control in order to proceed to the part where you teach him the social and other skills he is lacking. And through it all, firmness with empathy and love. When a horse refuses to go into a barn, you don't punish him. You look in the barn to see if there's a snake. These children really do feel distressed; they're usually not being manipulative. There's a balance of how to meet their needs without letting them run the show, and most of us just aren't magically going to get there.
•    Anonymous said…I know how you feel, we had a living hell for 13 years with our daughter, with no family to help, no respite and no support, finally someone listened and noticed it was more than naughtiness and now she's diagnosed with aspergers & medicated. She still has her moments, but she's a more like a normal kid now. It's definitely saved our family and given her a chance of a decent life. :)
•    Anonymous said…I think my stepson has ODD, he hasn't been able to go to school since he was 11 as he is unable to sit still, concentrate, and always gets soooo angry when he is unable to do something or feels intimidated.
•    Anonymous said…Im going through the same things!!! My family cant even stand to be around him, they want me to give him to the state!! his special EI based school doesnt want him either, they often threaten to have him taken away by the police...lots of notes sent home..every day, he cant handle school, he cant handle a daycare..where does he go??? How do I get back to work..im on a family leave, i have 2more wks left....michigan has very little resources....anyone?? any suggestions Im so running out of time....
•    Anonymous said…My heart goes out to these moms. Our family is in the same boat. We have a 15 yr old son. Very aggressive and easily angered. I love a lot of the information here and give kudos to your site but I thought this reply was a little lacking in actual help. Identification and replacing the behavior is a little simplistic for the situations. At 14 yrs of age these teens are not necessarily youngsters who can be easily removed from the situation or able to easily apply a change to the way they respond. Although the article did identify that it would take time there is a huge gap in how to do that. It just seems to lead to more frustration and the Mom's left feeling more alone and defeated. I was hoping to find a second page with the deeper answer. It reminds me of sitting in an IEP meeting during his 6th grade and the solution they wrote down for my son was "He will work on doing better to get into less fights with his classmates and he will work on finishing his homework." That was it... just a feeling of "do better" with no achievable action plan.
•    Anonymous said…My son also was diagnosed with ODD along with ADHD, anxiety disorder, AS and more. We put him on risperdal and the ODD practically disappeared-it was quite miraculous!! I think that his anxiety was overwhelming, causing the ODD.
•    Anonymous said…My son has a diagnosis of Asd, ADHD and possible ODD, he is also being tested now for premature puberty-he's eight. We feel lost, and feel there is no where to turn, we home educate him as he can't cope at school. You are not alone. Xxxxxx
•    Anonymous said…my son has adhd ,ODD and aspergers and we use ritalin,and risperdal the risperdal was my saviour he now sleeps like a baby and i have seen a huge difference in him the school says he chooses his behaviour and its non of the above but now the teach has implemented a eeward system for each 40 min session in the day we seeing huge improvement …its taken me 4 yrs to find what works but there is hope
•    Anonymous said…my son has adhd odd ocd tics and sensory issues very difficult.
•    Anonymous said…My son has also been diagnosed with ADHD, which makes it even more difficult.
•    Anonymous said…My son has AS and intermittent explosive disorder. Tantrums started around 3 and quickly turned into rages. Preschool made him worse. By the time he was diagnosed in Kindergarten we were at our wits end. We had tried parenting like we had with our other children but it wasn't working with him. With the diagnosis came a lot of info. Had to completely change the way we dealt with him. Wasn't popular among some family members, but slowly became better. Spent 3 yrs at spec ed school. Takes Tenex, (blood pressure med) that helps tremendously with rages. We were fortunate to have wonderful teachers and admins that bent over backwards to help him. Now at 11, he isn't perfect, but is actually enjoyable to be around most of the time. There are many situations that he just can't handle right now, and we don't force him. Life isn't perfect, but Hope is alive. Number one suggestion is to learn to remain calm in all situations, and don't react confrontationally. Learn to pick battles, and overlook lesser infractions to concentrate on the most important ones. Don't get into power struggles, you will never win. Small settings with as little stress as possible, makes for a more pleasant Aspie. Good luck and hang in there.
•    Anonymous said…My son has same diagnosis.
•    Anonymous said…Oppositional Defiant Disorder is very hard to deal with. At home, there are some days when everything seems to be a fight. At school, notes come home that my son is refusing to do work, not following directions, and sometimes yelling at and threatening adults. Sometimes it just makes me want to cry.
•    Anonymous said…Same problem with my 10 year old. About to lose my job sigh.
•    Anonymous said…There is help, you just have to find the right professionals willing to help and not give up with "sorry, there's just nothing we can do to help." Our 11 year old was diagnosed with ODD 3 years ago on top of the AS diagnosis he had received at 4 years. It's taken a lot of time and work, and some medication, to get to where we are, but he is doing very well. Tantrums are less frequent and severe (less, not gone!), he has friends, he's more manageable... ABA has been huge!!! And smaller school environment has also helped. In just a paragraph, I may have made it sound easy or simplistic. Believe me, it hasn't been, but there is definate progress and lots of hope.
•    Anonymous said…There is help. My youngest has adhd and odd. Are you in the uk? If you are send me a friend req and ill help you out
•    Anonymous said…These two go hand in hand every time.
•    Anonymous said... And very important to take time for you. It can be very difficult to do that with responsibilities such as you have but if you go down who's going to keep the steering the ship?
•    Anonymous said... behaviour modification training works with ODD behaviours. you need to over structure their lives from what they eat to what they wear., give them NO choices at all to begin with and then allow them a choice between two options once you get 100% compliance. Choices are the reward for compliance and appropriate behaviours. It was hell but I had to do that with with my child. it is easier when they are younger. ODD is behavioural and only behaviour therapy works long term for it! As for books of how to do Behaviour Modification training, go online or to your library, it is extreme parenting for the extreme child. the pay offs are huge and the alternate is a wrecked home and life for you and your child. Medications do help but the child needs to learn to comply and to control their actions. It is not easy but either we teach them or the prison system will and that is heart breaking and sad. The truth is there is very little help and support out there. Keep up your best efforts and do not be hard on yourself. At 14 he can work to help himself!
•    Anonymous said... Early, early, early diagnosis is key...so treatment can be started when they are open to it, and continue consistently over the years. Only then can we get somewhere. The preteen years are too late... My daughter was dx at 11. By then, hormones exacerbate all of it and it's much harder to help them get control.
•    Anonymous said... Get you a counselor to help you cope and him a cognitive behavior therapist my son is the same way I know how hard it is but don't be ashamed to get help I did and Im not as stressed as before. I still get frustrated alot and theres alot of arguments with my son but you have to learn to choose your battles read Tony Atwoods guide to asbergers syndrome it will help with ideas as well
•    Anonymous said... Hi im in the very same way as you my 14 year old son asbergers left home on tuesday to live with his dad he does not like to follow rules
•    Anonymous said... I'm sorry it's so so hard. It is unbelievably stressful and emotionally draining. I often find myself saying and doing mean things and I'm a Social Worker who knows a lot about communication Ect. I feel for you. I'm not sure where you live but in most areas there will be a practitioner who can either help support you or work with your lad. We have thought we might separate our family to try to minimise conflict in the future. I feel for you and know how helpless things can feel. Take care.
•    Anonymous said... My son (15) has Aspergers and ADHD and also has treatment for depression. He was diagnosed aged 12 and it took my breakdown and his feelings for ending it all to get him diagnosed. We have ritalin (40mg daily) and prozit (2.5ml daily) and agree it took him to want to accept his Asperger's and ADHD. 2 years ago we would have been happy with Ds at GCSE. With help from school, us and CAMHS we are hoping for Bs, Cs and maybe even one A. It is a difficult journey but with age can come maturity and although we are not out of the woods yet we can see the light at the end of the tunnel. You are definitely not on your own here. I remember the days of the smashed tv all to well. Chin up xx
•    Anonymous said... My son also had odd with aspergers and ADHD. We medicate the ADHD but only for school. At home, he gets therapy frequently to help him learn how to use words rather than rage and to manage himself. It's a long road. I would keep a journal and document the meltdowns to try to get to the bottom of the causes and then you may be able to come up with idea for avoiding them. The therapist might be able to help you with this too. Sometimes they just can't find the words and it's worth talking about it after the fact when all the drama is over to try to find out. Explore sensory input. For example my son will meltdown if he has to wear buttons. He cannot tolerate the way they feel on his skin. For the longest time, he would freak out and I couldn't figure why until I asked him one day out of the blue. Avoidance is key. Message therapy might also help. Experiment and try stuff. Hang in ther. Try to get out and have some fun of your own when things get to be too much.
•    Anonymous said... My son also has aspergers and adhd ,what u have just wrote is my daily life ,my home is destroyed ,nd getting no help with the educational aspect ,he is in main stream school ,nd is excluded presently twice a week ,I can't get a statement for some reason ,my sons education is at reception class standard ,and he is 12 years old ,I can really empathise with what u are going through ,I am a single mum ov 6 teenage kids ,so very hard to show the rest any attention x
•    Anonymous said... My son has the same diagnosis with Bipolar just added during his last inpatient stay. My ex husband and I both have dealt with destroyed homes, frequent suspensions from school, attacks on us and teachers. His 1st inpatient stay was a year in a facility specifically designed for kids on the spectrum. They adjusted medications and got him under control. Upon return to school, his behaviors began to escalate and it wasn't long before he was back in the hospital. At 10 yrs now, he has 5 hospital stays behind him, we've moved to a new school, finally got a great teacher that loves him no matter what and is working with us. His medication coupled with weekly individual and family counseling is working and we have had no meltdowns in 3 weeks. Progress is slow, but we are grateful. Hang in there, you are not alone
•    Anonymous said... My son is 15 and has been on medication since he was five. It has changed over the years, but the neurologist told us in second grade to treat the anxiety first then the other issues. Aspergers children suffer from the unpredictable and lack of structure. Once we got the anxiety under control we treated for ADD. Then at 14 he had some severe paranoia, stopped taking meds and punched a hole in the wall. He spent a week in care and was not allowed to leave until he was cooperative. He now takes a third medication for mood stability. It has been a difficult journey and there is no help out there. His counselor cancelled sessions because he has no psychiatric goals...I was floored. People question why we have issues in society...our mental health needs to be progressive for all of our kids. I am a teacher and there are so many kids affected! You're not alone!!!!
•    Anonymous said... My son just got back into our home from residential placement. He was there inpatient for 11 months. He originally at age 3 was diagnosed ADHD, once put inpatient at age 12 that diagnosis was changed to Aspergers along with Depression, ODD, RAD, it has been a very rough roller coaster ride. His bad behaviors out weigh his good. We have many services in place for him, but HE has to be willing to change his ways. We have 6 months set up for him. If he returns to his old self, self destruction, suicide, he will then be placed into a group home. All of you going through things like this or more. Realize you are NOT ALONE !!!!!
•    Anonymous said... My son was diagnosed with ADHD-hyperactive impulsive type with with signs of depression and anxiety along with ODD at the age of 6. His treatment is Vyvanse 30mg every day and he is supposed to go to counseling. We also work very closely with the principal, school psychologist, school counselor, and his teacher. We also take him to see our doctor every 6 months.We noticed signs when he was about 3 or so. We had him tested at 4 but the psychologist we took him to at that time couldn't make the diagnoses stating we would have to wait till he was school age. Prek and kindergarten was not pleasant. We are in a different school district fr when he was in kindergarten. He has been doing GREAT in first grade and second grade.
•    Anonymous said... There is medication to lessen irritability and aggression, also repetitive behaviors. Abilify. My almost 13 yr old daughter has been taking it for about a year, and from the beginning it helped (it does take about 3 weeks to get into the system).
•    Anonymous said... This is my family too. You are not alone. I had to move out with my 14 year old so everyone else could be happy and safe
•    Anonymous said... We use a great lady therapist , been through many of them she teaches social thinking skills, plus other techniques. He has changed so much. We also use a program that is part of a wrap around service child guidance resource center. They work at home , school and out in the community
•    Anonymous said... Why aren't there medications for that?
•    Anonymous said... Wow, I thought It was I who had written this, and forgotten, until I got to the 9 year old daughter part. I know EXACTLY how you feel, for awhile I had a permascowl. Our son is 14, on no meds and this is the worst year by leaps and bounds. Don't get me started on my precious necklace he took a pair of pliers to. We never talk about school, though we have gone to two p/t evenings with him in tow, but we decided early on, when we realized he was determined to rebel, to simply let him fail. (You can lead a horse to water, but you can't make him drink.). It is now January and that is exactly what he's doing, failing. HOWEVER, we are maintaining a relationship with him, mostly me, mom. I realized early on that tearing out our hair and handing out consequences was futile so decided to take a softer approach, and it's working. There are still consequences but not the anger and volatility that goes with it - and we are getting a positive response. Our psychologist says that as long as there is a true relationship, some sincere connecting, at some point, they will come around. If we lose that connection, we might lose them. And I will, even if it's just my fingertip on his shoulder for only a second, grab any opportunity to touch him. I like what our psych said, that's what I have for you. Oh, and remember to breathe. P.S. His school is amazing by the way - don't know how we'd cope without them.
•    Anonymous said... You can still do wraparound services (TSS, BSC) and social skills classes if they're available in your area; he should already be in individual therapy if he has such anger issues..
•    Anonymous said... You may private message me as all these suggestions are well intentioned but overwhelming and all children are still different apart from the diagnosis. I have been working in the Mental Health Field for many years - My husband and I also do therapeutic foster care. We currently have a 13 year old boy with Aspergers and an 11 year old diagnosed with Reactive Attachment Disorder. Support is key - Please let me know what area you live. Stay Strong!!

*   Anonymous said... Our son is 9 years old and we are experiencing the same. Fortunately our doors are solid wood and our walls are thick mud brick so he can't damage anything. We have him on medication and it helps a lot. When he isn't on it it is just awful. He is in respiradone which is an anti psychotic drug that calms aggression as well as Concerta (Ritalin for concentration) and Fluoxitine (antidepressant). Even on all this he is a very challenging child and causes major problems. His school is very supportive and we have a myriad of people helping us. We also have a 14 year old with dyspraxia ADHD inattentive and a 5 year old with a heart condition which has been a tough road and not helped our 9 year old. We just don't have the energy to follow through on all the suggestions we are given. We just want this living nightmare to end but dreams are free. He is very unpredictable.
•    Anonymous said… I agree with a lot that's already been said so won't repeat... Just wanted to say firstly, there IS help for your son and secondly, you need help and support too. Take care of yourself. Consider anti anxiety meds or anti depressants and see a therapist that you can 'offload on'.
•    Anonymous said… I feel your pain, there is most definitely meds and speak to them about behaviour therapy. Good luck x
•    Anonymous said… May I just ask what the problems are that everyone encounters? I'm at the very beginning of the process and I'm absolutely terrified. My son will be 3 in Feb and I'm almost certain it is aspergers/high functioning autism he will be diagnosed with eventually. His outbursts are becoming more and more aggressive and I was hoping that getting a diagnosis would help me help him as I'm clueless about what to do. There's so much information out there but what works and what do you trust?
•    Anonymous said… Mood stabilizer!! Our daughter takes it for strong ocd which can turn into a manic situation at times. She also takes prozac and lithium. We tried 11 meds in 4 yrs before finding this best combo. She herself she's she's feels like its a dream and doesn't want to go wake up. Keep trying!!! Get therapy.
•    Anonymous said… My grandson is also in the same boat and my Son and daughter in law at wits end .
•    Anonymous said… My life same. I feel your pain I used these guys for nutrients and neurofeedback http://adhd.com.au drug free treatment . Also Nurtured Heart Approach parenting. By Howard Glasser saved my life. It's about building inner wealth
•    Anonymous said… My son is 14 & also has these issues, but there is help. We do alot of things still like brushing, listening therapy ect that even at his age do continue to help. He takes prozac & clonidine & so far so good.....not perfect but manageable. Good days & bad but much better then it was.....good luck to you
•    Anonymous said… my son is waiting to be diagnosed for Aspergers after 8 yrs of hell which is still continuing. hes bin on meds for ADHD but no longer on them as he got TICS really bad, hes under child psychiatrist who dismissed his hearing voices as 'something we all experience!!!!!' r u kidding me!!!!! it ttook my son whose 11 a lot of courage to even tell the shrink this n angered him that she didnt believe him!! his words.
•    Anonymous said… Once he is diagnosed often times insurance will cover for in home help. Or they may cover a portion of the cost. I will ask around.
•    Anonymous said… We are all very similar.I lay in bed heartbroken as my son with aspergers gave his playstation and games to this woman who friended him on line said she would come over and play games. As we all know...they are dying for friendship. She took them and said she'd brig.g them back. We don't know her name or where she lives.he had her text number he told her to bring them back or we would call the police. She said she didn't care. The police wouldn't do anything. So hes hysterical and demands a new system and games. Sorry son tough lesson. He through a major fit. I had to have him stay with his dad. I can't handle him. He's 18 and 6' tall and 200 lbs. I have holes in my walls too
•    Anonymous said… We took the biomed approach for both my aspies, drugs just made my teen gain 30 lbs and turned her into a zombie. Biomed found 2 conditions, Pyroluria and Methlyation issues in both, 1 kid is an Overmethylator, my other is an Undermethylator. ODD/OCD issues are almost always caused by Undermethylation which is treatable without drugs! (all 3 issues are) its a long road but a year after starting treatment I had 2 very different kids! My teen is now a happy straight A student but we also do a lot of different therapies from OT to address sensory issues to the emotional stuff but without treating the biomed stuff its hopeless.
•    Anonymous said… You could be describing my situation exactly. My son was diagnosed with high functioning ASD earlier this year after taking 7 years to get a diagnosis. He is now also 14 years old. I have also replaced doors and filled in holes in walls, as well as replacing trashed carpets, electrical equipment etc. He also has a younger sister who isn't allowed to do teenage sorts of things like play her music. We too were left with nowhere to go after the diagnosis. So what I did was contact my MP and asked him to complain on my behalf to the NHS, saying how disgusting it was that a young boy should just abandoned like this. My MP put in a complaint to the Chief Executive of the NHS, Simon Stevens, who then got in touch with my local Young People's Service at the 2gether Trust, to report back to him with progress. My son now has several appointments lined up with a child psychologist who specialises in ASD who, I hope, is going to help my son accept his condition and help prevent some of these meltdowns. I'm not sure if it will be successful but at least I feel that I'm doing something. I hope this helps and best of luck x

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