When our son received his autism spectrum disorder diagnosis, the paperwork I was given gave him a diagnosis I had never heard before. Our son’s diagnosis is Autism Spectrum Disorder: Level 2: “Requiring Substantial Support.” When his therapists and others would ask about the results, it seemed as though no one understood what that meant! Out of all the questions I hear, these are at the top of the list. “What are the different levels of autism” and “what do the levels of autism mean?”
Understanding Autism
Autism is a developmental disorder. It affects individuals’ behaviors and communication skills. These symptoms can range from mild to severe. According to the Centers for Disease Control, autism affects an estimated 1 in 59 children in the United States today.
Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions. These are characterized by challenges with social skills, repetitive behaviors, speech, and nonverbal communication.
To determine levels of autism, doctors consider two things:
- Social Communication
- Restricted, Repetitive Behaviors
Understanding the Levels of Autism
For the longest time, Autism was broken down into several different diagnoses such as Asperger’s, PDD-NOS, and Rhett’s Syndrome. Since the release of the DSM-5 in May 2013 (for diagnosis purposes), Autism became defined as a “single spectrum disorder” in which levels were determined.
(The DSM-5, published in May 2013, is the official publication of the American Psychiatric Association which defines psychiatric and developmental disorders.)
Keep reading to learn about the symptoms of each level of Autism.
Level 1: Requiring Support
Those with level 1 autism will have struggles with communication skills and socializing with others. While they may be able to carry on a conversation, they might struggle with the back-and-forth of the conversation. Along with this, they can have difficulties with starting social interactions. Also, they may have problems with adequately interacting with peers. However, they likely are verbal and just have difficulties with these social norms.
Autistic individuals with a level 1 diagnosis will have repetitive type behaviors and routines/rituals that interfere with day-to-day life. These can include things such as difficulty with transitions and inflexible behaviors. For instance, they may struggle with planning and organizing (executive functioning).
Level 2: Requiring Substantial Support
For someone with an autism level 2 diagnosis, they will need substantial support. The symptoms associated with this level of autism include a more severe lack of both verbal and nonverbal communication skills. Due to this, these impairments are noticeable even with extra supports in place for the individual.
These individuals will have difficulty coping with change to routine or surroundings. For example, loud noises and certain smells may cause them distress. When these behaviors are interrupted, the individual will become frustrated. They will have difficulty with being redirected from the item of interest.
They may have very narrow interests and struggle with discussing topics that are not of their preferred subjects. Individuals diagnosed with level 2 autism tend to also benefit from a variety of therapies. Occupational therapy offers help with executive functioning, hygiene, social skills, and even help with careers.
Level 3: Requiring Very Substantial Support
Autism level 3 is the most severe of the levels of autism. These individuals will need substantial support throughout their lives. They will have a noticeable lack of verbal and nonverbal communication skills, with many in this category being nonverbal. These cause severe limitations in social interactions with others.
Their restrictive behaviors will also be significantly more noticeable than other levels of autism. An individual with this diagnosis will have inflexible behaviors. They will also have very restrictive routines/rituals and extreme difficulty with change and transitions.
Someone with this level of autism may also need a caregiver who helps them learn essential skills that will allow them to be successful in school, at home, or at work.
In Conclusion
These levels allow for a more accurate diagnostic description. However, the different levels of autism raise a few questions. What about those individuals that fall in between these two of these categories?
Most importantly, every individual with autism needs to get the support and love they deserve.
What do you think of the levels of autism? Let us know in the comments below. If you are curious to learn more about autism, make sure to check out what is Autism Around the World like and sign up for our newsletter below.
Although I recognize there can be different levels of support needed, I question the validity in using them as diagnostic variables. We need different levels of support in different environments, and the way we function varies considerably from environment to environment and from moment to moment. Most doctors make assumptions based upon how we “appear” to them in the doctor’s office, usually by whether or not we are verbal at that time or stimming, etc.
We all grow up, and don’t have the same person supporting us at each visit, nor does the autism appear
be same to others throughout our lifetimes. The autism remains the same, but the outward appearance changes periodically.
Doctors are for the most part very ignorant about autism, probably because the majority of the “research” has been by non-autistics and interpreted from a non-autistic perspective without autistic input. MOST of the assumptions upon which the interpretations are based are false. Non-autistics lack empathy with autistics as a rule.
Autism is not behavior. It is much deeper and more pervasive than that. Autism affects our behavior, but CANNOT be defined by it.
I think it more accurate to stick with “autistic” as the diagnosis, and add applicable SPD or various comorbidities to describe it further. Of course, most doctors have no interest in accuracy where autism is concerned, at least in my experience, (and that of those with whom I interact)
Hi Miilanna! Thank you so much for you view on the DSM-5. I agree that there is still a ton that lacks in the DSM and many will fall between the cracks. Thankfully, as we age, we are now able to give doctors input that they previously did not seek or receive from those who are actually autistic like ourselves.
Times are much different between my childhood and now with my children’s diagnosis. There is just as substantial difference from that of diagnosis that happened ten years ago when y brother was diagnosed. The only way that there will be a change in how these diagnosis criteria (and general public opinion), will be with those who are actually autistic educating doctors and others about how we see things as well as from parents of children diagnosed to speak up as well. That is why I am so happy about the self advocate and neurodiversity movements going on throughout the world. It is a huge step in the right direction.
The best way to ever change someone’s opinion is to first fully educate yourself on what they believe. In the case of the DSM-5 (and any previous or future publications of it), we must understand what it means in order to disagree or agree with parts of it.
I agree with you 100% that I wish that they would stick with a just an “autistic” diagnosis. As the phrase says “Once you have met one person with autism, you have met one person with autism.” Hopefully, the DSM will began to reflect that more as they update it.
Thank you for starting a dialogue about this, I greatly appreciate it!
-Alicia
We used to live in NC when my son was diagnosed with autism it is a spectrum not levels we were not receiving the correct information or resources from the county we lived in luckily being from another state I was able to move and in as little as 4 months I have received more information and resources than ever before I’ve never heard of levels because anyone who has an autistic child knows they do not fall under any category that’s why it’s a wide spectrum no two autistic children are alike this is a lot of bad information. the reason that the doctors and therapists didn’t know what it meant was because the diagnosis of Asperger’s, PDD-NOS, and Rhett’s syndrome have become obsolete since before the earliest date of 2013 she listed it is the autism spectrum because levels cannot work since every child has different needs abilities and talents they no longer use those terms I’ve never heard anyone ask the question about different levels and what do they mean doctors know so little about how autism is caused or where it comes from to label it as levels is absurd I’ve never heard of DSM-5 and I’ve done a lot of research online with doctors and therapists sounds like you went off of 1 study and didn’t research others when that study is controversial maybe you should look into another state one that has better information I had to
Hi Tracy, This is based off the DSM-5 which is the Diagnosis and Statistical Manual of Mental Disorders Volume 5, the current dsm used by all doctors in the mental health progression in the United States and ma y other countries. This article is based off quiet a bit of research as well as two of my children’s diagnosis by two separate doctors. When my son was diagnosed, we were given 100% of the information which included his level 2 dx. With my daughter’s dx (and my own), we were not given this but I requested her files and hers was a level 1. For myself, I was not given any levels. I have learned that those diagnosed by primary doctors and psychologist that treat a multitude of mental health disorders do not often have a level associated with their diagnosis. My son was diagnosed by an autism specialist. My daughter was diagnosed by a child psychologist, and hers was never mentioned to us but only found when I requested her files. My diagnosis did not contain one at all and neither did my niece who was diagnosed after my children.
I agree that no two people are alike and also agree that many would fall between multiple levels. That being said, this is simply an explanation of the current DSM and not personal opinion. Personally, I believe they tried to get away from labels (aspergers, pdd-nos, etc) but in exchange just created new labels with the levels. Chances are, the DSM 6 will be much different, but only time will tell.
We are very blessed to be getting some amazing services for our children, but it has been an uphill battle for my niece to get services, and she only lives one county over in the same state. Its amazing the large gaps in services based off location and insurance. Even the service we received took a ton of perseverance to discover and receive for my daughter who was diagnosed at 8 vs my son at 23 months.
I love this information. Based off of the information you’ve provided, my son’s diagnosis, my oberservation of his behavior & traits & the therapy treatments he receive, I can see he’s a level 1. Maybe no two autistic children are alike but there are many children that are very similar. My son is 6 & my best friends son is 3 and a half. These boys are extremely similar & I can’t tell you how much my experience with my son has & still continues to help my friend in her journey. Keep doing what you’re doing. I think it’s awesome! I’m sure after my friend reads this she will agree.
These levels seem to be known by people who work diligently for children on the spectrum. I should say the FAMILIES, not professionals. I’ve asked many therapists on different levels and they look at me cock-eyed. When you want something done RIGHT, do it yourself. Bravo to this special mom who cares to share and pass along vital information
Isn’t it truly the parents who diagnose their child first? I will honestly say that practicing physicians and therapists have not been trained in the different levels of autism spectrum diagnosis. Each state has variables regarding much needed resources for the child. Many families have moved from one state to another due to the lack of much needed resources.
Counties and school districts have fought parents who have a great need of therapy for their child, whether it is OT, PT, Speech, Social recognition. In NY State, it is mandated families receive a manual on the “RIGHTS” of the child. It is unfortunate that many people do not read this well written mandates. The family needs to be well versed on what is needed and allowed by law for a free and proper education for their child.
The nerve of districts to say no to therapies when the family is doing everything in their power to protect and nurture their child. Every family MUST remember the term “Impartial Hearing.” This allows the family to say they want an impartial hearing for the noted therapies their child is entitled to by law. Then the respons MUST come back within a very short period of time. The state sends in a third impartial party and listens to the families. School Districts abhor this process and many times will “cave in” and give the child what they are legally entitled to.
I felt this is critical for families to make a mental note of what they can do to again protect and nurture their child.
A very concerned special educator,
Peggy McGovern Bender
I very much disagree with the “levels” of autism. As someone WITH autism (formerly referred to as Asperger, I require no support. I am a functional adult, hold a master’s degree, am working on a doctorate, and employed in the field of…mental heath.
Do I struggle sometimes with close relationships and social cues within them? Sure. For most general social situations however, I’m quite able to apply a generic interpretation of vocal tones and body language
That works in about 95% of situations.
Every single person with autism is different. Every single person with autism will require different things, just as their deficits will be most noticeable in different areas. Lumping them together with any accuracy is next to impossible, because every person’s strengths and deficits are so different, just as their needs are totally different.
Hi Mna, I couldn’t agree more! As an Autistic adult, I am doing no worse than any NT would in the same situations.
The down side to the DSM in general is the professionals that create the labels and diagnosis do not consult with individuals affected by the disorders, parents or caregivers, or even providers in the field working directly with the individuals.
I have spoken to many professionals who also dislike the dsm5. My middle daughter was also just dx, but her doctor actually coded it as aspergers. I laughed a little when I saw the coding, which prompted the conversation about her (the doctors) opinions on the dsm5. She wholeheartedly agree even at best, most individuals who are autistic fall in between 2 different levels.
My hopes is that one day, those who create the DSM and similar publications will start listening to those in the field and the actually individuals opinions.
I object to these “levels” because one autistic person can test out at more than one level, depending on the subject matter. They can be absolutely brilliant in one area, requiring no support, but be learning disabled in another area, requiring a great deal of support. How does this factor that in? Take an average? How is that helpful to the autistic person?
One autistic person can have OCD, SPD, Anxiety disorder, a genius level IQ while being learning disabled in certain subjects, etc. This can’t be accurately or appropriately stuffed into a “level”. This seems to be another case of non-autistics trying to figure out how to pigeon hole autistics into neat little round holes that square pegs simply do not fit into.
I am really unimpressed with this dismissal of the individuality of the needs of autistic people.
Betsy, you are spot on! The biggest issue with the DSM5 (and other similar publications) is that they fail profusely to involve autistics, family of autistics, or even the professionals that work directly with autistics.
My son was diagnosed as being on the autism spectrum when he was 5. This was through our school district and does not count as a medical diagnosis. He is receiving the help he needs at school and our insurance is covering outside therapies. As a mom do you have any advice on how important a medical diagnosis is? I’ve asked different occupational therapists and I come away just as confused as before I asked the question.
Hi Rose. I will first say, do what you feel is best for your son no matter what anyone else advise.
My personal opinion would be to get him a medical diagnosis if you believe he is autistic. It is very hard even for an autistic child to get an IEP for educational autism, so that is a great starting point. It is also great that your insurance is covering occupational therapy without a diagnosis.
The reason I would personally recommend getting him a medical diagnosis is due to several parts, mostly not knowing what the future may hold. If for some reason he would need financial assistance in the future (or even now as a child), having a medical diagnosis will be asset in receiving government help like SSI (social security income). If something were to change in your insurance, or even when he gains insurance as an adult, many insurances will deny occupational therapy without a diagnosis.
Another major reason would be to the actual diagnosis process. The older you get, the harder it can be to receive a diagnosis. Certain facilities even have a cut off for ages that they diagnosis, which make finding a doctor to do the testing can be difficult. Also, there is typically a long wait list to even be tested for autism. Even for children that shows signs at 18 months, it is not uncommon for it to take three months to see a specialist to test. That time goes up as children get older, upwards of a six month wait. So the sooner you decide to start the process, the better.
My opinion would that there really wouldn’t be any negatives to getting him tested (other than possible copays/coinsurance) where as there as some negatives to not getting him tested.
I hope that helps some, but please feel free to reach out to me whenever with any questions. I’d be more than happy to help in any way I can. My email is admin@themomkind.com
This is excellent. I came by your post while searching for info on DDA eligibility based on FSIQ. My 7 y/o’s score is 20 points above the limit, so even though he is considered in need of substantial support for behavior and social skills (he has a FT para assigned to him, in his mainstream class), b/c he’s too smart intellectually…he isn’t “impacted” enough for benefits. There’s a social skills group I am planning to enroll him in for the summer, and they take DDA – this is not covered under our insurance, which is funny really: a group that facilitates positive social interactions – in real time – is immeasurably more helpful than what insurance companies will cover, namely ABA. But I digress. While grousing about this to his resource room teacher today, I said that social deficits are so easily hidden behind “intellect”. Talking with my son, even in his difficult moments, it’s almost impossible to tell he’s missing key skills – he just seems rude or impulsive. His ability to read and do math at a third grade (and higher) level doesn’t mean squat when he comes unglued at a kid who says “you HAVE to play this with me” b/c he literally believes that he is now compelled to play this forever, as he doesn’t understand the nuances of relationships. It’s heartbreaking. I wish there was an easy way to measure for those skills, that would spit out a fancy IQ to unlock useful resources. Thanks for letting me vent. I really love your insight, as well as the others here too!
No worries! We all need a chance to vent now and again! Insurance companies are such a pain when getting the right services. Even our 11 year still struggles with social skills, so I completely get it! If you ever need to reach out, shoot me an email to admin@themomkind.com – Alicia
Hi there ? I know this is a little off track but I’m from New Zealand and have a (nearly) 3yr old daughter and a 1 yr old son, I have been told my daughter is on the autism spectrum and I see a lot of smmiler behaviour with my son I am unable to receive ANY help for them (as I am rasising them alone and could really use the advice etc) but have been told there is nothing that can be done until they can formally diagnose them at the age of 5 so was wounding if that is that same in the USA or do they diagnose earlier?
kind regards
Samantha
Hi Samantha, not off topic at all! Here in the US; screening starts at the 18 month check up. We had regression with our sons speech at 19 months and got the referral from his pediatrician to go to the major autism center here. After the wait to get seen and all the until paperwork, our son was diagnosised at 23 months. If there is ever a loss in speech, the only known cause of that at this point is autism. I’d look into different agencies around you. With having an older child already diagnosised with autism and your son showing signs, it actually should be a little easier to get him seen (atleast that’s how it is here). I would sit down and make a full list of everything symptom you see in him with details. That will help a lot since it is so hard to forget things when on front of the doctor. Please feel free to give me an email at admin@themomkind.com.
I have a 21 year old son living with autism that seems to be under the 3 level but not in every aspect . In my opinion the current way to classify the level of autism still need a lot to work on . The use of co existing conditions plus the level of clarification can provide a more accurate diagnosis that could lead to target with therapies in a more affective way .
I agree! I think they are working in the right direction, but still have much further to go.
My grandson is now 6 years old he is non verbal has been for a long time .he was diagnosed with autism when he was 3 . he use to not let anyone touch him but he is opening up to that now . he is my daughters son .she is very timmid around him .I don’t think she understands him .I don’t see him at all very often .it has been 2 years now since I saw him last but when I do get together with him he’s very affectionate with me. .he knows who I am I think. I accept who he is and his condion . my daughter has a problem accepting him as he is . his name is Rambo .he is a wonderful little boy .I treasure our visits very much when I do see him .I want to learn and help as many people with autism as much as possible
Hi Cheryl! I know it can be very hard, even for parents at times, to truly accept autism and work through everything. It’s great to hear that you are learning everything you can to help him and others, and that you love & accept him for who he is! If you ever have any questions, feel free to reach out! -Alicia
My husband has been told by a psychiatrist that he likely has autism. He has never been tested, because no one told him until he was a financially struggling family man. But these language, and nonverbal problems… What are they? Can they include bad language?
I have ADHD, and transitions are a normal, debilitating part of my life. He gets to attempt maneuvering these transitions with me. They are very hard for him. He takes a long time to make decisions.
He loves talking about things that interest him. He has recently had trouble talking about the feelings of anyone in the family except him. Especially if he is approached by him. He seems to see his pain and anguish so much he can’t see past it. It is the understandable to a degree… He has fibromyalgia, three bulging discs in his back, a chronic sinus infection, occasional ulcers, he is going deaf (and loves to sing), insomnia, depression, untreated sleep apnea, etc…
I don’t have the know how to help him when he struggles hard. I studied psychology a bit in school, but I only have an associate’s degree.
Any advice for me?
Hi Alele,
Non verbal means not being verbal, not using spoken word. Language refers to the usage of language, not on whether or not a person curses. This covers things like social and emotional communication skills. When it comes to the levels of autism, the diagnosis levels are typically aimed more towards children. With your husband not receiving a diagnosis until later in life, he more than likely would be in the level 1 of the current diagnosis criteria, but typically in late life diagnosis he would receive a straight diagnosis of autism. On the last diagnosis scale (the dsm4), he may have likely been diagnosed with Asperger’s or PDD-NOS.
I was also have a later life diagnosis of autism along with a fibromyalgia diagnosis. The Fibromyalgia alone is debilitating and causes extreme fatigue, which in return causes depression. With that list of diagnosis, he is obviously in constant pain. That type of pain most people cannot begin to comprehend, so it is great that you see that for what it is.
Your husband will have to find his own path when it comes to all the aspects of autism and the pain, but I can tell you the steps I took. A book that might help help understand his own diagnosis is called Living Well on the Spectrum by Valerie Gaus.
Though I have two prescriptions I take, I do supplement my diet with the right foods for my needs. I eat foods that are high in healthy fats and avoid overdoing meats. Eating fresh food and avoiding processed as left me feeling healthier. There are some supplements that I do take due to the lake of them in my diet. I take fish oil and CoQ10 for mental clarity, vitamin B complex & Vitamin D (lack of energy), along with Melatonin (for sleep). These along with gentle exercise can make a huge difference, but do not leave you pain free or completely free of the fibromyalgia brain fog. When it comes to supplements outside of actual diet, always consult with your physician as they might interfere with certain prescriptions. I really enjoyed the book Own the Day, Own Your Life by Aubrey Marcus, it really helped me learn what foods and health I need to focus on.
A diagnosis later in life serves more (in my experience) as an explanation of things that didn’t add up all along. One thing would recommend for him would be looking into mindfulness and mediation. Being able to find the calm among st the chaos is a huge help. What your husband needs most is your support and love. If either of you have any questions ever, please reach out to me. My email is admin@themomkind.com ~ Alicia
Hello, without reading other’s replies, I believe it is good to have a consistent spectrum for all, I do not believe that 3 levels is the right direction to go, I have to say falling into level one, there should be a breakdown within that, those previously known as Asperger do not fully fit into level one they are somewhere in level 0-1, although some of the traits may apply they shouldn’t always be broadly applied to each individual in that grouping.
I absolutely agree. Personally, I feel like a majority of people would fall between different levels. The diagnosis process has a long way to go. The silver lining is that medical professionals did see an issue within the diagnosis process and are trying to make changes accordingly. My hope is that future DSM publications will consider the views of patients, family members, and doctors working with the patients directly when they make changes like these.
Levels changed so that the diagnosis could be covered under insurance. In the past when someone was diagnosed with Asperger’s it was a struggle for insurance to cover services. Putting all of it under autism with levels seemed to ease that problem. Think of the different levels this way level 1 is what was known as Asperger syndrome level 2 was high functioning autism and level 3 the more classic autism nonverbal and other more classic signs. The PDD and Rhett’s don’t quite fit and as a professional it’s really hard when I get a client who was formally PDD or Rhett’s and is now classified under autism because none of their traits are similar. Thank you for your article.
Thank you for this break down. I thought it was very helpful!
I have a question. Can you the level change over time? For example, if a child is diagnosed as level 3 when they are 1 or 2 years old, can it not change over time, depending on how they develop, early interventions and other variables?
While it’s not been discussed anywhere near enough, based on how the levels are set up, I believe a change in levels can absolutely occur.
My daughter is autistic, struggles with executive function skills. I get cross and inpatient with her and feel bad. It causes tension that take her a long time to recover. She doesn’t feel safe and unsupported. I don’t know how to help her and there is little to no support in our area. I think some of the areas overlap.
The intent behind the “levels” is mainly for insurance purposes. Depending on who your health insurance is, they may determine that a Level 1 diagnosis doesn’t not warrant any kind of therapeutic support. This is a whole other can of worms, but when my 3 year old was diagnosed 2 months ago, that’s how it was explained to me, in the simplest terms.