Moderate to Severe Autism

As a mother of a wonderful little guy with moderate to severe autism, I’ve been disappointed in the dearth of sites focusing on the unique needs of this subgroup of the autism community. I hope this site will be informative and encouraging to families with kids like mine.

For those that are new to the world of autism, here are some of the basics:

Autism is a spectrum disorder encompassing a wide range of deficits in three main areas:

  • Impaired social interactions,
  • Speech and language difficulties,
  • Repetitive and stereotypical behaviors.

Of these, impaired social interaction is the hallmark feature and is present in almost all forms of autism.

How can one tell if a child has mild, moderate or severe autism? A simple way to find out is The Childhood Autism Rating Scale (CARS). The CARS rates functioning in 15 categories and can be . Higher scores reflect higher severity of autism. Those on the moderate to severe end of the spectrum generally have no/little speech and there is often an overlay of some cognitive impairment. The CDC estimates “about 40 percent or more specifically 41 percent of children with autism having an intellectual disability”. However, as one parent quoted “the good news is that the only direction that people move on the spectrum is up”. Very true. Early and intensive interventions do work so never give up hope!

Here’s some autism facts from the Autism Speaks website that I found interesting:

  • Prevalence of autism: 1 in 88 children (1 in 54 boys)
  • More children will be diagnosed this year with autism than with cancer, diabetes and AIDS combined
  • Autism costs the nation $137 billion annually.
  • NIH autism research = $169 million (or 0.6% of total NIH funding of $30.5 billion)

Hmmm…I’m probably biased but only 0.6% of NIH funding for Autism? Seems rather low given the high prevalence of Autism as compared to other childhood medical conditions.

Hope this is helpful. Check out my blog posts by category to get more of an idea of some of the characteristics of moderate to severe autism. Or submit a post if you wish to add to this info…

11 Comments

11 thoughts on “Moderate to Severe Autism

    • Glad you found us. Just visited your very informative blog over at Autism in New Brunswick. I so appreciate and support the important advocacy work that you are engaged in. Thank you.

  1. I drop a comment whenever I like a post on a site or I
    have something to valuable to contribute to the conversation.
    It is triggered by the sincerness communicated
    in the article I read. And on this post Moderate to Severe Autism | Moderate
    to Severe Autism. I was moved enough to drop a thought :-) I actually do have 2 questions for
    you if you do not mind. Is it only me or does it look like some of the remarks look
    like they are coming from brain dead individuals? :-P And, if you are writing on additional online sites, I
    would like to follow you. Would you list all of your public sites like your
    linkedin profile, Facebook page or twitter feed?

    • Hi, thanks for your comment. Are you a parent of a child with autism? Not sure what remarks you are referring to but I don’t recall any that don’t make sense. Regarding your second question, I don’t write anywhere else or participate on social media sites due to time constraints and privacy issues too.

  2. Thanks for this. My son was diagnosed with PDD-NOS last year at 3 y/o. After his re-evaluation yesterday, they changed the diagnosis to ASD Moderate to severe. I’m going to try cranial scapral therapy to see if that helps him with his tantrums and social behavior. Although it’s not permanent like any massage, it can’t hurt.

    • Krystal, thanks for stopping by. I don’t know about cranial sacral therapy except what I just now googled and read. Guess it’s sort of like a massage so as you said, it can’t hurt, it may actually calm your son down. My rule of thumb is to make sure anything I try does not have the potential to hurt my son. I always first try the standard approaches (i.e. ABA, OT, ST) before anything else but I know the feeling of desperation when nothing else works & you feel like you need to try anything as long as it’s not harmful. I’m still struggling with that feeling regarding my son’s haircut phobia. Mars has also recently started to tantrum with signs of aggression for the first time and everybody tells you ABA is the answer but so far ABA hasn’t made a difference. Anyway, if you try it, please come back & share about your experience. I strongly suggest you keep a log and make sure it is really beneficial before spending tons of money on it. Good luck.

  3. I have a three year old son who was diagnosed today with moderate to severe autism. I would love to talk with u and learn more from a parent whose has walked thru the shoes I’m walking in now. My son also has a hair cutting phobia as well so I have been cutting his hair at night when he is sleeping with scissors. It’s difficult to hold a flash light and cut at the same time but so far so good. He hates to even have his hair brushed or combed or washed so keeping it short really helps. I have the toughest time getting him to try new foods. He only will eat a few foods but chicken nuggets and French fries is basically what I can get him to eat besides dry cereal cookies n pop corn. His diet is very unhealthy but I have tried everything. He will gag if I try to feed him anything else and he just looks at food like its gross or something. He just started headstart this past week and he scream to get dressed now bc he thinks he is going to school. We haven’t been apart since he has been.born n difficult for the both of us. He does fine after about twenty minutes of crying but getting him out the car is just very bad. I just hope him going to school does more good than bad. He is completely non verbal and wants nothing to do with his speech therapist. He does love doing puzzles on the iPad or my touch screen phone. He has mastered eighty games in less than a week so I know he is very smart. Potty training isn’t going well either. Any ideas on any of these issues? thanks!!

  4. Hello! My son was diagnosed on December 12,1013 with moderate to severe. He is two years old. Since he was born He has always been a great sleeper, takes nap sleeps through the night. Ate everything and anything up until he was around 11 months. He started crawling 7-8 months walking around 10 months. He was always a good quiet baby. As of right now at 29 months he still completely non verbal. He loves to cuddle, give hugs and kisses and enjoys being around the family. He gives great eye contact, uses head gestures for no, still doesn’t quite follow simple directions but will help clean up if you show him. He loves to share and gets really excited to play tag, hide and seek and ready set go!!He has never thrown a tantrum and still doesn’t. I’m just wondering if other parents think if i need a second opinion on his diagnosis.

    • Hi Sarah,

      Your son sounds like a sweet loving boy. Enjoy him & his cuddles and kisses. I really don’t think they can diagnose at 29 months whether a child is moderate or severe. It’s great that he has good eye contact & can gesture “no”. He may still develop speech but I would focus more on developing his understanding & teaching him both sign language & PECS. You can probably get “Baby Signing Time” videos from a public library or order online. You can get a 2nd opinion diagnosis if it makes you feel better but more importantly, get him into Early Intervention through the school system (or Regional Center if you are in CA).

      Thanks for sharing & best wishes.

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