Some Advice for Others Who Care
Caring friends, extended family and professionals often want to know what they should and should not do to be as helpful and supportive as possible to parents of more able people with autism. Some of the advice that I offer here pertains to parenting any handicapped person. The rest is very uniquely specific to parenting a more able person with autism.
- Do not say, “I know how you feel.” No matter how close you are to the parents, no matter how many parents of handicapped people you may have worked with, you still do not know how we feel. You can empathize with us, but you are not experiencing this process in our place.
- Do try to include our autistic loved ones in your social gatherings or outings whenever appropriate. Some of my most painful memories of raising my daughter concern her being excluded from birthday and other parties of her classmates, family friends and neighbors.
- Do not say, “You must be a very wonderful person for God to have chosen you to have this child.” We parents of handicapped children are no stronger, braver or purer than anyone else. I would personally lose my faith in God if I thought that God chose me or my child to bear this burden. Basically, this well-meaning statement says to us parents that you think this situation hurts and taxes us less than it would you.
- Do offer us a chance for respite whenever you feel you can. Even a break of an hour can be a great help.
- When we were living in California and our daughter was 2, a kind neighbor whom I barely knew called me one day when our daughter was about 1 and ½ hours into what turned out to be a 3 hour tantrum. I thought she was probably calling to complain about the noise. Instead she offered to come over and be with my daughter while I went to her house and took a swim in her pool. She explained that her teenage son had once had emotional problems, which included tantrums, so she could handle the noise and commotion. I did not take her up on her offer, but knowing that I could if necessary gave me the strength and courage to continue.
- Do not offer unsolicited advice. We parents are often given unwanted and even stupid advice by people who think that they are experts on how to raise our children because their children are normal and ours are not. Our society imposes on parents of handicapped people the terrible prejudice that they have produced damaged goods and are thus inferior people and parents.
- Do say that you care and ask how you may be of help.
- Do not say, “But all ________ (teenagers, toddlers, young men, girls, etc.) do that or have a problem with that.” While it is true that what our more able autistic loved ones think, feel, or have difficulties with are common to others, it is the degree and extent of the difficulty and the impact that it has on their lives and ours that is so very different.
- If a parent seems unduly upset or discouraged over a particular problem, remember that the problem you see is not the only one the parent is dealing with. It is the reality that it is but one of the continual stream of problems.
- When our autistic loved one is in an activity outside the home (scouting, church youth group, YMCA activity), do not assume we want to be there with them. This could be an excellent opportunity for the parent to have a break from the autistic person. I often felt that there was a sort of unspoken blackmail conveying that idea that if I wanted my handicapped child in an activity, then I must buy her way in by helping with the activity. I would not have minded if this happened with just one or two of her activities. However, this seemed to be the case in almost every activity.
- Do not try to cheer a parent up by saying, “You don’t know for sure that _______(the autistic loved one) won’t ever be able to…” We all have hopes for our children, but we work hardest to habilitate and plan for them when we are realistic about their probable future limitations.
- It is all right to say, “I wish I could say something to make it better, but I don’t know what that might be. I hope that the future will be good to you and your child.”
- Regressed behavior in our autistic loved ones often causes regressed behavior in parents. When a person with autism is experiencing a regression, parents experience a complete upheaval in their lives. People who have been friendly and supportive often stay away or completely sever their relationships with both the autistic person and the family. Professionals often question what the parents might be doing differently at home to “cause” the regression. This is, at best, accusatory and, at worst, insulting and counter-productive.
- During the regression of their autistic child, parents become fatigued, depressed, worried to the point of panic, and more emotional than usual. This tends to shorten our patience and our tempers. Unfortunately this is the time when we need to exercise the greatest strength, patience, and logic toward our autistic child and all with whom he or she comes in contact. All friends, loved ones, and professionals should try to be extra supportive and patient during this difficult time. Times of regression are part and parcel of being autistic. Seldom, if ever, can the “cause” of the regression be traced to anything that the parent is doing.
- Parenting any person with autism, regardless of functioning level, is a very challenging experience. Do not assume that because parents have a higher-functioning person with autism, they have fewer or smaller problems. Many parents have told me of incidents in which parents of lower-functioning people with autism have made them feel guilty about expressing their problems.
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