The Autism Society Event and Education Recordings Archive

Families are greeted after the diagnosis with an “expert” telling them what their child will never do because of his/her limitations. Due to this families tend to think only in the “now” and of recovery. The future becomes something dark, not to be acknowledged. Through planning and on-going evaluation the future can be positive and successful for the individual and his/her family. Lets us show you how to start your child on the road to becoming an adult. After families receive the diagnosis that a member of their family is on the autism spectrum, they go looking for answers and usually are referred to several “good” books written by “experts” who say things like “most autistic people never marry” or “few will ever have competitive employment”, or “most are mentally retarded.” Even those with an intellectually gifted child are limited almost instantly by “experts” and things they read when all that’s changed is a diagnosis. How great can the books be if they only give us limitations?

Most professionals approach autism with the need to "fix a problem". Parents and the person himself, however, must direct the focus of instruction not in terms of "fixing a person", but rather, helping him develop as a responsible adult. Social roles, developmental phases, and the skills and concepts integral to these must necessarily be the focus of becoming any adult. Focusing on the person with autism as a person first, with strengths, interests, skills and areas which need development is the key to successful preparation for adulthood.

Too often parents are given two choices, either recovery or a residential center. There are a wealth of options in between. By experience, sharing, and unyielding dedication to the person the child with autism is, will become, and high expectations, the sky is the limit. Planning and on-going evaluation is a key to each step to successfully enable your family member to reach their full potential and become a successful happy adult but you must start now regardless of the age of the individual. This presentation will provide a framework for evaluation by first: listening to ourselves and what the child with autism teaches us, second, providing support based on what we learn from and about the child himself, third, how to provide that support, and fourth, how to develop a plan to enable the individual to transition into adulthood successfully.

Getting kids ready for adulthood is really a matter of asking questions. Then the next step is teaching the kids themselves to ask questions. What we teach is based on the answers to the questions. At each critical stage, a central question is about behavior. What is the behavior telling us about what each of us need, how do we get that need met most appropriately and how can we teach alternative ways to communicate that need? Another key question as we grow and change, is what are others doing at this age and stage of the game? How does the behavior and communication of the child with autism differ or parallel what others are doing or interested in at this age or stage? What, if anything, should we teach about those parallels or differences in order to move to the next step? What are the expectations of others this age? Do we want to promote or ignore those expectations and how, if at all, do we address any differences in behavior between what is expected and what's actually happening?

We all start becoming adults from the day we are born. If you happen to be born “neurologically typical” then you learn a lot from watching your parents and other adults. Adults also pepper conversations and lessons with phrases such as “you’ll understand when you grow up,” “when you’re an adult you can make these decisions,” “you shouldn’t lend friends money because it can cause problems,” “you can’t buy friendship,” etc. Children on the autism spectrum would not understand these phrases and parents or other adults wouldn’t be saying them. While we may give our NT children an allowance to teach them how to handle money, we do not automatically do this with our child on the spectrum. We’re trying to teach him/her the concept of money but then we need to proceed from there.

What does it mean to be an adult and how do you teach this? Most people would answer in the abstract, such as “concern for others,” “can take responsibility for his bills,” “take care of his family,” etc. Unfortunately, this doesn’t help someone on the spectrum or their families. Parents need to know exactly what the day to day actions of an adult are and how to teach this to their children. Keep a diary by writing everything that you do during the course of a day, then a month, and then a year. Now you know the skills your child will need to live as an adult.

The next step is to break down each one of those activities in steps.(task analysis) Paying a bill is not simple. Your child needs to know and have a practical understanding of:

1. What a bill is?

2. What is money?

3. What is a checking account?

4. What is a credit card or a loan?

5. What & how to budget?

This same type of thing has to be done with the everyday living items such as: laundry, record keeping, shopping (grocery & clothes), cooking, cleaning, medical appointments/care, personal hygiene, etc. You have to evaluate each step to make sure that he/she has the knowledge to move to the second step. For instance a very young child can help you sort laundry but wouldn’t be able to put it into the washing machine or understand clothes that have to be washed on “delicate” cycles. Each step is geared to the age of the individual and then expanded with age. You also have to “test” each step. Individuals on the spectrum have a history of being cheated out of money, as in people borrowing money and not paying it back. Borrow some money from him but don’t pay it back until he asks for it and then challenge it. Obviously, this is for the individual who has mastered the higher money functions. It can also lead to him writing IOUs which is never a bad thing even when Mom and Dad have to sign them.

Some of the major items such as a job, housing, community living, and transportation have to have your input, observation of your child’s skills, and your child’s input. Sometimes we get so caught up in academic grades that we forget the grades will not get or keep him a job. As your child grows make sure you notice his interests and check out the job market to see if there is anything in those areas. You also need to take into consideration whether your child is a “night” person or a “day” person and if he/she has sensory needs. When evaluating this area parents and individuals must be very honest and not sugar-coat things because if you are not, the job will fail. Some individuals want to design block kits or video games. There is more involved in that than just loving to play and being proficient at it. You need to find out the qualifications of his/her “dream” job and then see if they are attainable. If for instance the individual is not good in math, he would have difficulty obtaining the degree in engineering that some block builders/designers are required to have. However, if the individual is good at computers, you might have him “try” his hand at designing on the computer. Perhaps a degree in Graphic Design is more obtainable. You could also contact the block manufacturer and ask if this is a good substitution. If your child could actually submit an idea, that would certainly help his case. If he/she is higher functioning, he’ll probably decide on a job himself but you’ll need to teach him ways to operate in a group. Again you can look at your own job (whether paid or volunteer) to get some ideas of how you have to deal with people everyday. Hopefully, your area has a job-coaching program, which can help your child actually “learn” the job and navigate the work area. This also opens up the area of “benefits.” An employer can take advantage of our children without even realizing it. For example, when it comes time to “choose” vacation days/weeks, someone with autism maybe be the last to make a choice even though his senority is higher than someone else is. There would also be the matter of lunch and what to do during lunchtime. If they eat fast, then what. Things like this are also things that a good job coach will notice and relate to you as parents. You have to evaluate your child as he grows to determine a “good fit” for him. If you own your own business or have contacts in the business world, you could now start talking of the possibility of providing your child with a part-time or summer job. This could then turn into a full-time job.

There are several different types of housing. If you want your child to live independently, you must make sure that the “community” will support him. If he can’t drive, is there available transportation? What type? You may need him/her to learn how to ride the bus/subway/other transit system. Does he need to learn to call a cab? Its easier to integrate into a community as a young child. If you can pick a neighborhood which would support your child’s needs but also has varied housing, he’ll be able to slip right into his own place. Now that you have an idea for the where you need to give your child the how (the skills to be an independent adult as we have previously discussed). There are also supported living arrangements, where individuals receive help managing their finances, shopping, transportation, etc. They usually live in their own apartment and someone conversant with autism is the apartment “manager” or they stop in to visit the individual on certain days. You need to check to see what these types of housing are like in your community. Ask them what requirements are involved and then make sure your child has the necessary skills. There are also group homes which usually require sharing a room. It would be better to check out any situations where the individual has his/her own room. Again you need to ask for the requirements and “teach” those skills to your son. If a residential center is the “best” placement for your child, then you have to set up some type of “oversight” committee. These would be a group of people who would “drop” in and make sure that he/she is all right. Again any training needs to start as soon as possible. If you wait until your child is 18 years old, you’re setting him up for failure. I always say that you should hope for the best but prepare for the worst. This means that someone who is diagnosed with severe classic autism has a hope of living as an adult in the neurological world and enjoying it.

Ongoing evaluation is a key to successful planning, not only in terms of the child but also in terms of the community. Autism is more accepted today therefore new avenues are opening up to individuals on the spectrum. You must be aware of how those avenues will or will not benefit your child. My suggestion is that you prepare for the possibility that your child may not be cured. He will need this information regardless if he has autism or not. Too many people are guided by professionals to seek out insurance, information about welfare, guardianship, etc. which is information they believe you need if your child is not cured. When dealing with these professionals you should keep in mind that they make a living off of providing it to you. It does not have to be either/or. There is another solution: Give your child a road map to adulthood and show him how to read this map. Then your child is not dependent upon what happens in the research side of autism. Instead he’s dependent on himself and he will probably have more tools than other individuals his age who are supposedly neurologically typical.

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