Working with undiagnosed autism

The media does a fantastic job on reporting the benefits of early diagnosis and treatment of autism, but the needs of older individuals have to be addressed too.

I’ve been working with individuals with disabilities for many years. About 10 years ago we had a huge increase of children being diagnosed with Attention Deficit Disorder (ADD) and Attention Deficient Hyperactivity Disorder (ADHD). Many of these individuals were treated with psychotropic medications to control their behaviors. Many did not respond appropriately or learn basic academics. So then they’d get a new diagnosis: Cognitive Learning Disability.

These individuals are 18 years old and older now, and when we review their needs we see key characteristics of autism. Do they have the diagnosis of Autism? NO. But do they have the limitations/challenges of an individual with Autism? YES.

Locating long-term supports for these individuals is very challenging. They often become drop-outs, involved in the mental health or judicial systems, with no opportunity for career success that focuses on their strengths.

Our workforce is missing out on an incredible pool of individuals ready for detail, routine and process!


 

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  1. Debbie Smith Says:

    Deirdre,
    Your nephew has a pretty incredible aunt!
    I am based in Cincinnati, OH, but there are adult services that should be available to your nephew in WA. I will send you a note to your personal email through my work email with some recommendations. Stay strong! As Patricia Wright noted in an earlier post…advocacy can be tiring…but absolutely worth it!
    Debbie Smith/Easter Seals WRC


  2. Deirdre Says:

    I have a nephew who is now 25 years old, 5 months older than my only son. At about 18 months following an innoculation, he became very sick. All his milestones went away. He started falling over, could not walk or crawl, he stopped growing including his nails and hair. He was seen at Loma Linda Hospital in S. CA and they did not know what was wrong with him. We are in the process of getting his medical records which apparently say that they felt it was an adverse reaction to the shots her got. He had water on the brain too. All kinds of tests. Spinal tap, etc…it was horrendous. He had trouble all through school and was diagnosed with ADD, OCD that I know of. His deficits are terrible. He’s a man child, and it is so apparent to me since my son is the same age. He is intelligent enough to do certain things, but not mature enough to see it through or to make good decisions on his own when required within that task. His level of conversation is very immature. He talks and walks in his sleep, and has trouble sleeping. He can get a job and do VERY well for awhile, and then he’ll end up getting fired for not showing up for work when he begins to lose interest. He does not have the wherewithall to pull himself up by his boot straps and go into work anyway. He is living with me now and I hope to get him diagnosed so that we can apply for Social Security Disability so that way he has some money coming in and health coverage. I do not know what else to do, or where to go to get him diagnosed by someone who is knowledgable in dealing with adults who were misdiagnosed or who the medical field neglected to diagnose. 25 years ago there was no such thing as the Autism Spectrum and autists were only the ones who were exhibiting profound symptoms, so my nephew completely fell through the cracks. We live in Olympia WA, so if anyone has any help they can offer with the name of a specialist, please email me at mikedee84@yahoo.com we would very much appreciate any help or advise out there! Good luck to everyone else on this very difficult journey. ~ Deirdre


  3. Patricia Wright Says:

    Dear Crystal, how great to hear that you have high expectations for your son and want him to acheive. I am not sure if your son is currently receiving special education services with an Individualized Education Program (IEP). If he does have an IEP advocating within that framework would be ideal. One of the best resources regarding special education advocacy is Wrights Law (http://www.wrightslaw.com/). Pam and Pete Wright publish resources, lead workshops and have a website that provides a great deal of information about effectively advocating for serfvices and supports within special education.

    If your son is not within the special education service array you might consider requesting a 504 Plan. 504 regulation requires a school district to provide a “free appropriate public education” (FAPE) to each qualified student with a disability who is in the school district’s jurisdiction, regardless of the nature or severity of the disability. FAPE consists of the provision of regular or special education and related aids and services designed to meet the student’s individual needs. You can find out more about 504 Plans here: http://www.ed.gov/about/offices/list/ocr/504faq.html

    Advocacy can be tiring. There are a couple of resources for support in EVERY state. The Parent Training and Information Centers (http://wdcrobcolp01.ed.gov/Programs/EROD/org_list.cfm?category_ID=SPT) provide training and information to parents of infants, toddlers, children, and youth with disabilities and to people who work with parents to enable them to participate more fully and effectively with professionals in meeting the educational needs of their children with disabilities. Protection and Advoacy (http://www.napas.org/) have the authority to provide legal representation and other advocacy services, under all federal and state laws, to all people with disabilities (based on a system of priorities for services). These two resources may be able to provide you with infomration resources to support your efforts.


  4. Crystal Says:

    My son is 9 years of age and has been diagnosed with ADHD and has a cogitive score in the “superior” range, however is struggling at school. Needless to say, the school is giving him A’s and B’s despite the quality of work being delivered, number of incomplete assignments existing, additional time spent after school expected to compelte classwork, and not to mention the stress that he is under(stomache aches, low self-esteem, ect.). All of which the school claims is not a significant problem, becasue he is receiving A’s and B’s. I know for a fact that some of his grades are not deserved based on the quality of work being sent home, not to mention the numerous e-mails about behaviors, ect. Yet, the school insists there are’t any “problems”, thus will not procide some basic modifications in the classroom-I am in need of assistance in the advocating area (I am trying to do it all myself, but finding it quite challenging to keep up) I feel the school needs to be held accountable-thanks!


  5. undiagnosed Says:

    It’s just so good to see how much support is out there for parents


  6. Kim Ressler Says:

    Please contact me my son is 7 and was diagnosed with adha about 2 yrs ago. I feel like I am not getting help from anyone and I hate these meds. please calll me at 610-395-5482. thank u so much. Kim


  7. Lisa Tate Says:

    Debbie,
    What an excellent point about individuals with Autism having similar challenges to those individuals living with ADD/ADHD and Cognitive Learning Disability. I’m so glad you brought this to light.
    Many parents of young children ask about the connection between Autism and ADD and ADHD and I respond by saying what you have said here.
    I know Easter Seals will continue to support individuals in the workforce that have all of these unique challenges!


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