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

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Recently Diagnosed Children with High-Functioning Autism: Tips for Newbie Parents

“My 6 y/o son Josh was recently diagnosed with high-functioning autism (2 weeks ago). I have always noticed there were some issues, and now things are starting to make sense. I have a mixed bag of emotions right now. I’m new to all of this and have quite a bit to learn. I’m not sure where to start or what parenting changes I should make – if any. My question is - what methods should you use to discipline your kiddos when they have misbehaved (e.g., hitting friends, annoying his sister, screaming at teachers… just to name a few)? Right now we are using a simple "reward" chart, which doesn’t seem to have much of an impact (so far). Any tips for a newbie will be greatly appreciated. Thank you!”


While it may be heartbreaking to say goodbye to the son you thought you had (i.e., a “typical” child with “quirks” rather than some “disorder”), you can say hello now to the son who needs you just as much - if not more - as you get to know his unique personality, and you can fall in love with your newly-diagnosed child with High-Functioning Autism (HFA) – formerly referred to as Asperger’s – all over again in ways you could have never imagined.

Acceptance-levels vary among parents. When their child is recently diagnosed with HFA, some parents come to acceptance almost immediately -- and even feel a sense of relief that there is a name for what has been going on. Other parents need more time to arrive at acceptance, and that's O.K. Then there are a few parents who seem to never accept the fact that their child has special needs and struggle with the diagnosis for a life-time.

In the beginning, be sure to look at your grief. It doesn't help to pretend to be positive when underneath you may be lonely, afraid or sad. The longing for the typical youngster or a typical existence may endure. You have to learn to live with that yearning.

Take some breaks for yourself. Your son’s treatment is important – but it isn't everything! As you get involved in the HFA community, your isolation will lessen. Granted, it is not what you were expecting, but the experience can be very rewarding and meaningful.

As you begin to get more involved in the HFA community, there will be more activity and company of others. This involvement will help you feel more “normal” because it provides more chances for interaction with other parents who are in the same boat as you. Over time, life and ideals change, and you will begin to dream new dreams for your real world.

Here are some simple – yet very important – “parenting changes” you will want to consider (some of these strategies will be new to you, others won’t):

1. Your HFA son must learn to appropriately communicate the cause of his aggression and get his needs met through that insight. The use of “social stories” is a great way to accomplish this goal. More information on this subject can be found here.

2. Your son will need clear routines, and if there have to be changes, he will need lots of warning.

3. You should let school staff know if your son is sensitive to certain sounds, smells or being touched. This will help them develop appropriate plans for him.

4. You do not have a “typical” child. You can view the issue as a disability, or you can view it as wonderful uniqueness – or you can view it as both! The "disability” viewpoint will help because it eliminates blame, sets reasonable expectations thereby minimizing anger, and points the way for you and your son’s teachers to see themselves as "therapists" – not victims. The “wonderful uniqueness” viewpoint will help because you really are in for a special – and often quite enjoyable – experience as a parent of an HFA child.

5. Be sure that you fully understand the difference between tantrums and meltdowns. More information on this subject can be found here.

6. Try some behavior modification. You must determine what need the “bad” behavior is fulfilling, and then teach your son a replacement behavior that will satisfy the need.

7. Think of the social world as a variety of "relationship road maps" that your son needs to perceive accurately and use talking tools to be able to follow.

8. Plan ahead. Give warnings before transitions. Discuss in advance what is expected, and what the results might be. Have your son repeat out loud the terms he just agreed to.

9. Pick your fights carefully. Is the issue at hand worth chipping away at your relationship with your son? Can your son really control the offending behavior at this moment?

10. Offer ways of understanding humor or typical childhood banter that uses available environmental cues.

11. Negotiate, negotiate, and negotiate. Moms and dads need to model negotiation, not inflexibility. You always gets to decide when negotiation is over and which compromise is accepted.

12. You did not cause autism in your son, so do not blame yourself.

13. Know that HFA kids are emotionally younger than their chronological age. So if your 6-year-old is still acting like a 3-year-old on occasion, things are going as expected.

14. Keep a sense of humor!!!

15. It may be helpful for you to arrange to attend a staff meeting to inform school staff about HFA and what this means for your son.

16. Be glad you discovered your son has HFA when you did – he’s only 6! It is better to find out that a child has the disorder now than to wait until he or she is much older. There are many things you can do to make your son’s future the best it can be. The sooner a parent gets the child into treatment, the better his or her future will be.

17. Instead of punishing wrong behavior, set a reward for the correct behavior you would rather replace it with. Rewards should be immediate, frequent, powerful, clearly defined, and consistent.

18. If the pressure on your son to conform in school is too great, if he faces constant bullying/teasing/rejection, or if your principal and teaching staff do not cooperate with you, then it may be time to find another school. If you decide to work within a public school system, you may have to hire a lawyer to get needed services. Your son should have an Individual Education Plan (IEP) and accommodations for the learning disabled. This may mean placement in small classes, tutors, and special arrangements for gym and lunchtime. Also, he should receive extra time for tests and examinations.

19. Teach your son to find a "safe place" at school where he can share emotions with a trusted staff member. The safe place may be the school nurse, guidance counselor, or psychologist.

20. If anxiety is so overwhelming that it is interfering with your son’s ability to manage normal activities, medication may be helpful. See your doctor to discuss this.

21. Know that “High-Functioning Autism” is just a label …it’s not a death sentence.

22. Help your son’s teachers to think about the best way to teach him and make changes to the classroom that will help his learning experience. Teachers will also want to know about the ways that you have learned to manage your son's behavior and any special routines or interests that he has and how he communicates.

23. Get to know your son’s teacher and meet regularly, along with your son, to talk about any issues that arise.

24. At the end of a “bad” day, forgive your son – and yourself. You didn’t ask to live with the effects of HFA any more than he did.

25. Find a support group. There are many organizations that want to help parents with “special needs” kids.

26. Fatigue after school is often a problem, and facing up to homework at the end of the day can be very stressful. You may need to negotiate with your son’s teachers about the learning objectives of homework and what he actually needs to do. Since many children with HFA can focus well in some classes (especially those that are built on “facts”), they may not need the repetitive learning tasks that other children need for some subjects.

27. Consistent behaviors and expectations will help reduce your son's negative behaviors. Daily routine creates stability and comfort for HFA children. Also, it helps to lessen their need to make demands on parents. When you establish a routine, you eliminate some of the situations in which your son becomes demanding (e.g., by building in regular times to give him attention, he may have less need to show aggression to try to get your attention).

28. Don't be ashamed or try to “hide” your son’s disorder. Most people know someone or love someone with autism, and speaking openly about it may help in finding others who need and want to talk about the disorder and their children.

29. Don’t argue or nag. Instead, either (a) decide that the issue is aggravating, but not significant enough to warrant intervention, or (b) simply issue a consequence.

30. Do you want to understand your HFA child`s actions? Just ask yourself: “What behavior would make sense if you only had 10 seconds to live?”

31. Celebrate your son’s unique humor, creativity, and passion.

32. Be "concrete" with your son. Tell him that the inappropriate thing he wants, or the unacceptable behavior that he is demonstrating, is not allowed. He needs to follow structured, consistent rules that will assist in modifying his behavior. Don't give in to hitting, throwing things, or yelling, no matter how hard it is not to.

33. As other children become more sophisticated with interpersonal relationships, it can become more difficult for a child with HFA to be involved in friendship groups, although they may be able to participate well in special interest groups (e.g., science groups). When managing social interactions is difficult, some solitary time can be needed and should not be seen as a “problem'.”

34. You will make it through this – you have no choice. Always keep the following ideas in the back of your mind:
  • this is hard work – and it is also hard work for your HFA child
  • the child who needs love and understanding the most will always ask for it in the most unloving ways
  • the client in autism is the whole family
  • negative behaviors usually occur because the HFA child is spinning out of control, not because he is evil

In conclusion, please resist your impulse to strive and struggle to CHANGE your HFA child …don’t strain to get desired results. Instead, enjoy the process of the work you are doing in raising him. The results you so desperately desire will come independently of your striving for them. Why? Because (a) you are doing a great job of parenting in spite of your opinion about your “parenting-skills” and (b) kids on the autism spectrum are late-bloomers. They “get it” eventually.

Enjoy the journey. Take heart. And don’t forget to take care of yourself!!!


How to Prevent Meltdowns and Tantrums in Children with Aspergers and HFA


COMMENTS

•    Anonymous said… ABA therapy did wonders for my ASD kiddo, and for myself. It helped outline what I should and shouldn't be doing and gave me step by step instructions on how to obtain the results I wanted.
•    Anonymous said… Also recently diagnosed kids but we've been following positive parenting approaches loads of positive praise and generally turning our back on bad behaviour which is attention seeking. We make sure to remove him from any situation where he can hurt others.
•    Anonymous said… Check out "The Autism Discussion Page" on Facebook. Bill has lots of very specific advice based on years of experience. He's also turned his posts into books. They were so helpful to me when my son first received his diagnosis.
•    Anonymous said… He's 15 now, and has grown fond of praise but has a much greater affection for sarcasm and practical logic.
•    Anonymous said… I'd look for local support groups both on-line and in person. Other autism moms are going to be your best resource for information. The city I live in has both an Aspergers and a autism group that we belong to. As far as educational support that really depends on your situation. Our son has an IEP but medical diagnosis does not automatically mean school support. The rest depends on what challenges your kiddo has and you go from there. We do OT, psychologist, and psychiatrist for med management. Also do a great special needs gymnastics class which teaches social skills. Good luck it's overwhelming in the beginning figuring out where to get the support to help your child.
•    Anonymous said… If he was just dx then the phsychologist/phsychiatrist should refer you to behavior therapy and all other needed servi es.
•    Anonymous said… I'm in the learning stage too as my six year old son is currently being assessed for Autism and other disorders. It has really been rough for the family since he turned six. I just want to help him so that he can grow up as a functional man.
•    Anonymous said… My advice is. Go easy on the discipline because these issues are complex. Best to remove your child from the situation for cool down time. After he collects himself, talk to him about making a better choice next time. My 10 yo boy was diagnosed Aspie one year ago.
•    Anonymous said… My daughter was diagnosed a month ago. Where is the support for these kids?
•    Anonymous said… My son always identified positive praise in a negative way. Someone who shuts down when recieving too much attention is not receptive to positive reinforcement. I could tell he knew we were being patronizing and he didn't deserve rewards for acting

•    Anonymous said… Pick your battles . Never become confrontational....if possible work on the reward chart with him so it's aligned to his need. We found with our son 12yr aspie that we had to constantly change the chart as boredom set in.
•    Anonymous said… Try removing him from the 'irritation' and engaging him with his 'go to/calming' activity (be it a comforter toy or a book or ...?) and then before he re-enters a similar situation talk to him about what he could do instead of getting overwhelmed.
•    Anonymous said… We use job cards and they have been working. It also helps having him know how to take care of and do things when and if he lives in his own someday. Nothing huge, but little tasks seem to work.
•    Anonymous said…I agree with easy on the discipline. Disicpline for our son has rarely worked at all. Our approach has been more of a rehearsing. We practice different situations and talk about how he should handle it if/when it happens. We practice calming techniques. We practice giving him the words to say. That way when he is in a situation we can calmly remind him how he could respond. There are some times when a consequence obviously has to happen. We outlined beforehand what those consequences would be witb input from our son. Reward charts have never worked. Our son is mow almost 12 and was also diagnosed at 6. There is no fool proof answer, and for us we just have learned as we go. Good luck.  :)

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