Nonverbal autism - PDDNOS - excessive prompting

[Anonymous]

My younger brother has NV PDDNOS. He is 23 yrs and has not spoken since he was 2-3 years old. He only very rarely initiates communication (example - handing you something he wants).

He has a voice box but he never initiates using it. If you stick it in front of him, he will press something (I.e; I want McDonalds) but I think he usually does it because you are putting it in front of him. He virtually never brings the voice box to you and presses something of his own accord.

Initiation is a big problem for him in general. For the past few years he has required prompting for everything. He will not take a bite of food until you look at him and give him permission. He will not use the toilet or do anything without external prompting. It is exhausting!

Recently he will refuse to get out of the car when going places, which will sabotage my family's plans. He appears to be growing more and more insular as he gets older. I don't see him making improvements, I see him regressing.

Both of my parents (divorced) have taken the attitude of catering to him and not challenging him. I feel this attitude has created this current situation where everyone is at his mercy and he expects us to figure out what he wants. I don't think he was challenged enough as a kid to learn and grow, so he has gone backwards instead. It's really disheartening.

I know he is smart and capable of initiating on his own, but he never does. I'd like to at least see him stop requiring prompting for everything.

Does anyone have experience with this?

[Anonymous]

Is he in a day program? What do they do? Does he have a behavior plan?

[Anonymous]

OP - I know as a sibling and of divorced parents that your life, too, has been impacted by your brother's disability. It seems like he is on the move challenged end of Autism, and it may have been a real struggle just to get him to eat on his own, toilet on his own, learn to handle his emotions so as to not be impacting on others etc. So I guess what I am saying is that you have to give your folks some leeway in saying what they might have/could have done more of. I say this as a parent of a young adult with much fewer barriers to daily living.

At this age, you are correct to assume that it is unlikely he is going to be interested in learning new skills unless he finds a reason to do. The question asked is very relevant. Ag age 23, public education has ended so he must be participating in a day program and hopefully one that works with adults with Autism, too. It would be appropriate to raise your observations with the custodial parent, but again at this point your parents are probably tired and probably just used to the way things are going. What one might do with him in a day program is hard to say based on the client to staff ratio of support, the intensity of needs of others and frankly the background of support staff. But maybe if you sat down with the parent who has him most of the time and tried to ask them what they would like to see your brother learn to do the most that one goal could be brought to the attention of the day program person and developed as a reasonable goal to work on.

For your part, I do think it is appropriate to ask your parents what their plans are for your brother. If they have the funds for his future care in a residential setting great, but if they are like most of us, the cost is prohibitive. Ask if he has a Developmental Disabilities Waiver or an Intellectual Disability Waiver because the ID waiver is the one that fully funds any services including 24/7 support. I do think with even a DD Waiver, a person might also be hired a certain amount of time to work with your brother on goals as you have mentioned as another option. You need to speak up for yourself and your life ahead as to what you could and could not do for you sibling so there are no misconceptions on your parent's part. As you are seeing there is so much emphasis and funding placed on the first one-third of life and so little available in terms of funding and appropriate programs for those individuals who need support for early 20s to now easily 60s AND might I add their parents.

[Anonymous]

There is no Pdd anymore and it is all autism. But, it sounds like he is far more severe than his diagnosis and if he has not progressed by his age, it is doubtful in less he gets intensive help, it will change.

[Anonymous]

There is no Pdd anymore and it is all autism. But, it sounds like he is far more severe than his diagnosis and if he has not progressed by his age, it is doubtful in less he gets intensive help, it will change.

[Anonymous]

Anonymous wrote:Is he in a day program? What do they do? Does he have a behavior plan?

He is in a program through the ARC. It doesn't seem that they do much except take them out places and watch them. Basically adult babysitting. I don't think there's a strong emphasis on trying to improve behaviors. He has a "one on one" who spends individual time with him but I she also mostly just babysits. I can't complain though because she is paid very little by the government.

I wish there was something more we could do for him. He seems to be getting worse. He is so much more insular than he was 10 years ago.

[Anonymous]

I would consider consulting a behavioral therapist. They can help with the routines at home, e.g., implement visual schedules to help shape his behavior.

I also think it's hard to tell how a person on the spectrum will react to new stimuli. For example, the Mass Mutual documentary, "Autism: Coming of Age," showed a non-verbal young man with ASD who learned how to rollerblade:
http://blog.autismspeaks.org/2011/03/31/mass-mutual-presents-autism-coming-of-age/

OP, is there a plan for what will happen with your brother for the future in terms of living situation etc?

[Anonymous]

OP - you are a caring sister and again the things you might ask your parent who has the most interest in your brother would be:

1- Does he have a Medicaid Waiver which would pay for a person to do things with him one-to-one at home or out in the community as perhaps respite for a parent? I know the hourly rate is not much so if your parent(s) perhaps also paid the person privately a bit more in cash, you might find an interested person. It this is an option, I would go through programs serving at least teens with Autism to see if one could find an teacher or assistant who might like a bit of extra money.

2- I would also suggest looking for a college graduate student enrolled in special education with a focus on Autism, Assistive Technology/Communication Skills or emotional/behavioral disabilities to be a peer activities coach for your brother. I ideas might be to expand your brother's world and to build up his skills:

a- Volunteering - Could a volunteer job be found which is repetitive for your brother and a college student shadow at say a food bank stocking shelves, socializing pets or walking a small pet a the local SPCA if he likes animals or doing other simple tasks there etc.?

b- Life Skills - At home this could mean a routine of preparing a simple snack or meal before going out or after another activity to teach your brother some basic life skills.
And from what you say to just eat without prompting. Also at home just being a pal to possibly play a simple card game, do a simple board game or art project. A grad student might have an interest in working with the communication device.

c- Community Skills - Then expand out to community such as to get a snack while out and in time a fast meal at times. Doing things your brother enjoys - walks, running, swimming, bowling, library when not so busy. The present day program could tell you what your brother enjoys and has more trouble with.

d- **Recreation Partner in Special Olympics or Therapeutic Parks and Recreation Programs - It just occurred to me that a college grad student might also be hired to serve as peer volunteer in an organized sport training program or other therapeutic recreation activity program or even social program your brother might enjoy- BUT your parents would not.

While a background check on the student could be run, my primary focus would be that time would be given for the student to learn your brother's needs to that he would feel safe driving with him, taking him to a public place. Again, if too risky, then just look for a peer to do things at his home or close to and working on skills. We pay $12-15/hour for a peer activity student.

Look under area Therapeutic Programs with Parks and Recreation such as Fairfax I just found quickly:
Programs Listing for: Adult Programs

Adult Social Club-Annandale/Fairfax
Adult Social Club-Mount Vernon
Adult Social Club-Out and About (*not summer camp)
Adult Social Club-Reston
Adult Social Club-Teen and Young Adult (*not summer camp)
Dance Club
LeisurEscape
Meet and Mingle Social Club
Project Success II
Sports and Fitness
Weekenders' Social Club


3- If you have the interest, you could research under Adult Day Program providers in the area in which your brother lives to see if there are others and you might even encourage a visit to other sites by your parent to see if there is a better one for him. In our area there are several adult program options and some are definitely higher quality than others. The local Community Services Board or Autism Support groups could probably tell you the names of other day program providers. I found several resources using the Google search of: Day Programs for Adults with Autism+Fairfax County If you are in Maryland then just put in the largest area there.

The idea is how to expand the quality of your brother's world as he is still on the younger side rather than just saying that's it. I do not know specific programs in NOVA or MD.

[Anonymous]

What state does he live in?