Late Autism Diagnosis {Diagnosed with Autism as a Teen]

posted in: Special Needs | 20

Getting a late autism diagnosis. There has been so much big stuff happening over here lately. Adalia announcing her pregnancy to the family…Tilly and Jared getting engaged…and now this.

My son was diagnosed with autism.

It is no secret that we were hoping for this diagnosis. I have been working nearly three years for this. We only want one thing for our son and that is for him to have the best life he can have and be as successful as he can be.

He needs therapy, support, and services that he cannot access without that diagnosis. Insurance companies will not pay for therapy without the diagnosis, local therapy centers won’t even put him on their years-long waiting lists without that diagnosis.

I fought and fought hard to have him evaluated for autism. I am sorry, Seattle Children’s Hospital, but you failed. You failed me and you failed my son. After working with me and having me wait for 18 months, bring him in for numerous appointments you finally told me,
“We won’t evaluate him for autism because he has FASD”. You knew that from day one. You could have saved me time and money.

But you didn’t.

And so, through a series of events and phone calls, visits to the office in person to plead our case, and “social communication” therapy I managed to beg and plead and get my son evaluated.

The doctor who did the testing said to me, “I could almost, almost give him the diagnosis just from what Children’s wrote in their report. I don’t understand why they didn’t just check the box”.

So she evaluated him. She spoke to his teachers, to me, to Chuck. She had us fill out more forms and had the school do more testing. And finally, she met and evaluated him.

Then I waited for the weeks to slowly roll by.

The night before the appointment when I would hear the results I told Chuck, “I am scared to go to this appointment. If he doesn’t qualify for an autism diagnosis I have nothing else to pursue. There is no next step.”

I can fuel my fight with anger, frustration, and desperation. But I cannot fight and advocate for my son without hope.

[As I write this, I am thinking about how ironic this all is. My son has no idea I am fighting for him. He doesn’t know he needs an advocate. He doesn’t have the ability to plan a future for himself. His desires are relatively simple. He wants to eat Cheerios and peanut butter and honey sandwiches. He wants hours to build with LEGO undisturbed. He wants to play video games and watch movies. And he wants cats. Lots of cats.]

So, yes, we were hoping for a diagnosis of autism. In the waiting room I thought to myself, “Maybe he’ll at least be borderline…maybe he’ll have Aspergers…”

And that’s why we were totally blindsided to hear that he has severe autism.

Severe.

According to the DSM-5 this means “requiring very substantial support”.

No arguments there.

I know what you are thinking (because I have thought it). How do you make it to age 14 without being diagnosed with autism? Especially if you fall into the severe category?

There is a simple answer to that question. Every “quirk”, every delay, every symptom has simply been chocked up to FASD. The diagnosis he has had since age 2 1/2.

The doctor assured me that he does indeed have FASD but many of his behaviors are 100% autism, not FASD.

NOFAS does a great job of listing the differences:

  • Autistic children have a harder time relating to others or initiating social interaction
  • Individuals with FASD may develop verbal and non-verbal skills slower than normal, but they usually eventually do develop them while individuals with autism may not
  • Autistic children may speak in a stilted, robotic manner or not at all while children with FASD are usually able to speak more easily
  • Individuals with FASD tend to be more animated and outgoing while individuals with autism have a hard time expressing spontaneous emotion
  • Both disorders are characterized by difficulty with change in rituals, but autistic children are much more unyielding than children with FASD

One of my son’s biggest struggles is communicating. He cannot find a way to verbally express his feelings. He cannot be reasoned with because he lacks verbal skills. Basic social interactions are a struggle. He has a  nearly 100% lack of eye contact.

We have a diagnosis which now opens more doors to services and therapies. It also gives us a direction to go in as we plan for high school (which he will be starting in the fall). I am still waiting to receive the official written report with resources and recommendations.

The other glimmer of hope is that we have not been parenting my son like he has autism. We are hopeful (because we have to remain hopeful) that changing our perspective and parenting will help everyone.

So, if you have experience in this area, please leave a comment linking to your best autism resources! TIA.

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20 Responses

  1. In a weird way, may I extend Congratulations? It can be a huge help to get a more clear diagnosis, with all the sudden explanation for past “mysteries” and the new range of services you will now be eligible for. So that is awesome!
    I have a feeling you are already very clued in as to what to do next, but since you ask, if you haven’t joined or even just checked out the website of the Autism Society of America, I highly recommend that. http://www.autism-society.org/
    Take every service offered to you, and see if your Supports Coordination needs to change, the person you have now may or may not be au courant with all the ASD stuff now available to you (like summer camps and respite aides for instance!)
    Wishing you all the best! My own son with severe ASD is 23.

    • Thank you! I am definitely interested in any links or resources. Now an awkward question…what is “Supports Coordination”? We don’t have one…or if we do I don’t know about it…

  2. Congratulations may seem like an odd thing to say, but I feel so glad for you and your son. Now there is hope of help and that must feel like a great thing. I pray this next part of the journey opens doors for help.

  3. No personal experience, but I think you would like the work of Clara Claiborne Park (both The Siege and Exiting Nirvana) about her autistic daughter, now grown, and the difficulty in getting a diagnosis, and how the family pulled together to help the daughter.

    • I read The Siege years ago…I’m not sure if I have read Exiting Nirvana, but I’ll go check it out. Thanks!

  4. Oh Renee, it does feel a bit off to say ‘congratulation’ but YES, now you KNOW. Now you can get the needed support. Now you have new strategies to explore and try… praying for you!

  5. Cecelia

    My son also received this diagnosis @ age 13. He’s 14 now. I’d be happy to chat later: )

    • Thanks for sharing that. It is comforting to hear about other kids being diagnosed so late.

  6. Rebekah

    On a different note: I’ll admit that, as a blog reader, I had no idea that it was Adalia who was pregnant. I wondered if it was one of your African-born children (or his spouse/partner?). Congratulations all around. Sounds like you’ve not been sitting around eating bon-bons. ( :

    • Shoot…I think I need to go back and edit that post then and make it more clear!

  7. Kristen

    Hi Renee,

    I just wanted you to know that reading your blog over the last few years has helped to give me strength and courage to fight for my children and stepchildren when I have previously been at a loss for support or even just the next step to take.
    I am so heartedly relieved for you, your son and your family to have finally received this diagnosis. I truly hope that it brings you all the help that you’ve been asking for so long.

    Congratulations to Adalia and Ben

    Kindly,
    Kristen

    • Thank you so much. I hope you find the help you need for your children and stepchildren.

  8. I’m equally happy for you and also angry/sad/frustrated that to get the support needed was such a struggle and so tied to labeled diagnosis. M is so blessed to have you and Chuck. As another comment said, you are a warrior!

  9. Renee, do you have any thoughts/ideas why Children’s Hospital would be so resistant in diagnosing your son with autism? I do remember just how much trouble you and Chuck had in getting a correct diagnosis for Apollo and even after, how the original surgery was not done right and had to be re-done at a different hospital in Texas. I am a tin foil hat kind of person and have wondered if your family size upsets people in Seattle. You and Chuck don’t fit into the usual two children and no more family type

    • Peg, the short answer is, I have no idea. The longer answer is, it isn’t just my son. I have a friend who was in the same process as me, waiting to have her daughter evaluated. Her daughter was born with some part of her underdeveloped but her behavior is very, very similar to my son’s. After her daughter’s evaluation (same long wait, same number of appointments) she was told, “H has so much anxiety we can’t evaluate her for autism. Get the anxiety under control and then bring her back in”. Umm…they’ve been trying to “get her anxiety under control” for years and anxiety is often a big part of autism.

  10. I would highly recommend having an aba therapist come in home to work with him. She will be able to help set the house up to be more sensory friendly. My son was diagnosed with severe autism, and Dr John Green, of childrenandautism.com was amazing in helping my son be physically healthy, but there were still problems in the end. He is 8, but mentally 6. I have had great success with the MNRI program by Musgutova. You can Google to find a program near you. Eye contact, and hyper activity are the biggest helps on my list. Also, we put my son in his own sensory friendly room, and THAT was amazing help. we hung an ikea swing up for him. I ended up building a small room for him. But melt downs and such are so much better since he has a place to go, that is safe. I keep an alarm on his door, because he likes to wonder out of the house at night. Now I always know his movements. that was huge. I also let him skip dinner on a bad night and feed him in his room, or wait until its quiet in the house. My son is obsessed with animals, and I do have to make sure to give the animal a break. Good luck, and I understand the relief of knowing. Now, you will be able to meet his needs easier than guessing.

    • Sarah, if only it were that simple. The reason I fought so hard to have him evaluated was because the insurance company won’t pay for ABA unless he has an autism diagnosis. Several local places won’t even put him on the waiting list without the diagnosis. Right now, the wait times are 3 years! M is 14 1/2. I highly doubt he will make it to the top of the list before he turns 18 🙁 Also, I know many ABA centers prefer younger kids where they can see more progress.

      Having said that, that is the plan. M has had his own room since Tilly left for NZ last year. This alone has helped immensely. We also no longer “require” M to come to the table for dinner. It makes me sad, but the house is much more peaceful!

Please share your thoughts!