Asperger's Explained: What Changed and Why It Matters
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Book a Free 15-Min ConsultationAsperger’s syndrome is no longer used as a clinical diagnosis. The history behind the term is more complicated than most people grew up learning. And how to think about the word now, including whether to keep using it, is a personal question many adults are still working through. This post walks through what changed, why, and what the shift might mean for you.
Asperger’s syndrome was a diagnostic category that existed from 1994 to 2013 in the DSM. In 2013, the DSM-5 folded it into the broader autism spectrum, and the term is no longer used in clinical practice. The condition itself did not change. The framework did. Many people still personally identify with Asperger’s because it is what they grew up knowing about themselves. Others have moved to autistic. Both are valid. This post walks through how autism understanding has evolved, why the term shifted, the misunderstandings that came along the way, and what the neurodiversity framework offers as a more affirming way forward.
- What Asperger’s syndrome was
- How autism understanding has evolved through the decades
- The neurodiversity framework
- The 2013 DSM-5 change
- What about the word "disorder"?
- Common misunderstandings of autism
- Why some people moved away from the term
- Why some people still identify with Asperger’s
- Identity-first language and what it means
- What this means for adults today
- What helps in adult support
- Frequently asked questions
What Asperger’s syndrome was
Asperger’s syndrome was a separate diagnostic category in the DSM-IV (the diagnostic manual used in the United States from 1994 to 2013). It usually described people who showed autistic traits including social difficulty, focused intense interests, and a preference for routine, but who did not have the speech delay or significant cognitive features that were sometimes part of the broader autism category at the time.
If you received an Asperger’s diagnosis as a child, teen, or adult during that window, you were being recognized as autistic under the diagnostic framework available then. The clinicians who saw you saw something real. The label gave you and your family a name for what you were experiencing. That name became part of your story, your self-knowledge, and sometimes your community. Many people who were diagnosed during that era formed identities, friendships, and online communities around the Asperger’s diagnosis. Those connections were and are real.
It is also worth saying clearly: a lot has been learned about autism since then. The diagnostic categories that existed in 1994 were built on the research and assumptions of the time, much of which has been refined or revised in the decades since. The condition that Asperger’s described has not gone away. The framework around it has just kept evolving.
How autism understanding has evolved through the decades
The way autism is understood today looks very different from how it was understood even thirty years ago. Research on the history and current understanding of autism documents how dramatically diagnostic criteria, clinical perception, and societal framing have all changed. Here is a brief tour of where the field has been, so you can see where you fit into it.
Tap each era below to explore the shifts in how autism has been understood. The history is long, the framework keeps evolving, and the people who carry the label have remained themselves through all of it.
Leo Kanner in the United States and Hans Asperger in Vienna both published early descriptions of what would later be called autism, working independently of each other. Kanner described what he called "early infantile autism." Asperger described what he saw as a milder presentation in a small group of boys he worked with.
These early papers shaped the next 70 years of how clinicians thought about autism, for better and for worse.
1960s
A theory called the "refrigerator mother" hypothesis, popularized by psychiatrist Bruno Bettelheim, blamed cold mothering for autism. This caused enormous harm to families before it was thoroughly debunked.
Some early behavioral interventions developed during this period have also been re-examined since, in light of feedback from autistic adults who experienced them as children.
1980s
Research begins to show that autism is a neurobiological difference present from birth, not a result of parenting. This was a significant correction to decades of harmful theories.
British psychiatrist Lorna Wing, herself the mother of an autistic daughter, brought Hans Asperger’s earlier work back to attention in 1981. Her research eventually leads to Asperger’s becoming its own diagnostic category.
For nearly two decades, Asperger’s syndrome is its own distinct diagnosis in the United States. Many adults reading this today were diagnosed during this period.
During this era, communities formed around the Asperger’s diagnosis. Forums, books, conferences, and a real subculture developed for people who identified with the label.
A fraudulent study by Andrew Wakefield falsely linked vaccines to autism. The paper was eventually retracted, Wakefield lost his medical license, and the supposed connection has been thoroughly disproven by dozens of subsequent studies.
The myth still circulates and has caused real harm to public health, but the science is settled. Vaccines do not cause autism.
Self-advocates begin to reshape the conversation. The framework shifts from autism as a disorder to be fixed toward autism as a natural variation in human neurology.
Identity-first language ("autistic person" rather than "person with autism") becomes preferred by many in the community. Books like Steve Silberman’s NeuroTribes bring the neurodiversity framework to a wider audience.
Asperger’s syndrome and several other categories are folded into a single diagnosis called Autism Spectrum Disorder. The term Asperger’s is no longer used clinically after this point.
The condition itself did not change. The framework around it became wider and arguably more accurate, recognizing that the previous categories had not been clinically meaningful boundaries.
2020s
Researchers and clinicians start to recognize the female autism phenotype, masking, and adult presentations more widely. Late diagnoses in adults, particularly women, rise dramatically. Research also begins to document the higher overlap between autism and LGBTQ+ identity, particularly among trans and gender-diverse adults, who have historically been underserved by frameworks that did not include them.
Understanding of autism becomes more inclusive of the people the earlier diagnostic frameworks missed, including women, LGBTQ+ adults, AuDHD adults, people of color, and people whose presentations did not match the older stereotype.
Through all of this evolution, the people who carry the label have remained the same. Only the language around them has shifted. If you grew up with one of these earlier frameworks, your diagnosis still belongs to you. Whatever language fits you now, fits.
The neurodiversity framework
Probably the most important shift in how autism is understood is the rise of the neurodiversity framework. It is the lens we use at Sagebrush, and it is worth taking a moment to explain what it really means.
The term neurodiversity was coined in the late 1990s by an Australian sociologist named Judy Singer, herself autistic. The idea is simple but radical: human nervous systems vary, and that variation is natural. Some of us process information differently. Some of us have stronger sensory responses. Some of us think in patterns or systems. Some of us communicate directly while others read between the lines. None of these are defects. They are different ways of being human.
Within this framework, autism is not a disorder to be cured. It is a difference to be understood and supported. The challenges autistic people face often come less from their autism itself and more from a world that was not built with their neurology in mind. The sensory overwhelm in fluorescent lighting is real, but the lighting was a choice. The exhaustion from forced eye contact is real, but the social expectation around eye contact is a cultural norm, not a universal truth. The framework asks: what if we adapted the environment, rather than asking the autistic person to adapt themselves into exhaustion?
This shift matters because the previous framework, which treated autism as a disorder to be normalized, sometimes caused real harm. Some early interventions developed in past decades, including some forms of applied behavior analysis (ABA), have been re-examined in light of feedback from autistic adults who experienced them as children. The conversation about how to best support autistic people across the lifespan is still evolving. The neurodiversity framework supports autistic people in understanding themselves, identifying what they need, and building lives that honor how their nervous systems really work.
Embracing this framework does not mean ignoring real challenges. Many autistic adults have significant support needs, and the framework includes them too. What it does mean is treating autistic people as the experts on their own experience, and treating the goal of support as flourishing rather than passing.
Neurodiversity does not mean autism is easy. It means autism is not wrong. The challenges are real. So is the worth of the person carrying them.
The 2013 DSM-5 change
In 2013, the American Psychiatric Association released the DSM-5, which made significant changes to how autism was categorized. The previously separate diagnoses (autistic disorder, Asperger’s syndrome, pervasive developmental disorder not otherwise specified, and childhood disintegrative disorder) were all consolidated into one diagnosis: Autism Spectrum Disorder.
The change was made for a few reasons. Research had increasingly shown that the boundaries between these previous categories were not clinically meaningful. People who were diagnosed with Asperger’s and people who were diagnosed with autistic disorder often had very similar profiles. Clinicians applied the categories inconsistently. Folding them into a single spectrum with levels of support need made the diagnosis more consistent and arguably more useful.
If you were diagnosed with Asperger’s before 2013, your diagnosis is not invalid. Most clinicians and the autistic community itself recognize that people who carried that diagnosis are now under the autism spectrum umbrella. You are not expected to get re-diagnosed. The label changed. You did not.
What about the word "disorder"?
Just as some people have stepped back from the term Asperger’s, there is also ongoing conversation in the autistic community about the current diagnostic term itself: Autism Spectrum Disorder, often shortened to ASD. The specific piece many autistic adults push back on is one word in the middle: "disorder."
The case against "disorder" is rooted in the neurodiversity framework. Calling autism a disorder frames it as pathology, as something broken, as a thing that needs fixing. For many autistic adults, that framing does not match how they experience themselves. Having a clinical diagnosis is genuinely useful for accommodations, school and workplace support, insurance, and access to services. Identifying as "having a disorder" is something different, and it is something many autistic people do not relate to.
Some of the alternative terms in use across the community include:
Autism, used alone. Without the spectrum disorder framing. Simple, direct, neither pathologizing nor diluting.
Autism Spectrum Condition (ASC). Used more widely in UK research and increasingly elsewhere. The word "condition" carries less pathology than "disorder."
Autistic, or autistic person. Identity-first language without the clinical wrapper. The most common way many autistic adults refer to themselves in personal contexts.
On the autism spectrum. Familiar phrasing for general audiences, not clinical, not pathologizing.
Neurodivergent. A broader term that includes autism, ADHD, and other neurological differences. Often used when someone wants to describe themselves in a way that does not require identifying a specific diagnosis.
What has not changed is the clinical side. The DSM-5 still uses Autism Spectrum Disorder (ASD), and insurance systems, school accommodations, workplace disclosure forms, and other official paperwork generally still use the clinical term. The "D" is the contested piece. The rest of the diagnostic framework is largely uncontested.
What this means in practice: your personal language and your clinical paperwork do not have to match. Many autistic adults use "autism" or "autistic" when describing themselves in everyday life, and accept the clinical ASD label on the forms that require it. The framework around how autism gets described is still evolving, and you do not have to wait for the manuals to catch up before using the language that fits you.
Common misunderstandings of autism
The history of autism is also a history of misunderstandings. Some of these have caused real harm. Others have shaped public perception in ways that still affect how autistic people are treated today. Here are a few worth naming, since you may have grown up with some of them attached to your diagnosis.
"Autism is rare." It is not. Current estimates from the CDC suggest about 1 in 36 children in the United States is autistic. Adult prevalence is harder to track because so many adults grew up undiagnosed, but the number of late-diagnosed adults seeking evaluation has been rising sharply, especially among women and AuDHD adults.
"Autistic people lack empathy." This one has caused enormous harm and is largely wrong. Research increasingly shows that many autistic people experience more empathy, not less. What can look like a lack of empathy is often a difference in how empathy is expressed, or sometimes the result of autistic alexithymia (difficulty identifying emotions in the moment, in the body) which is different from not having feelings.
"You can grow out of autism." You cannot. Autism is lifelong. What can change is how well a person’s environment supports them, how much they understand themselves, and what coping strategies they have built. The autism stays.
"High-functioning and low-functioning are useful labels." Many in the autistic adult community have moved away from these terms, though some families and clinicians still use them, sometimes because the alternatives feel too soft for the level of support a person genuinely needs. The concern is that single-dimension labels often flatten real experience. Someone called "high-functioning" may be drowning internally while looking fine externally. Someone called "low-functioning" may have rich internal experience that gets missed because they communicate differently. Many contemporary practitioners use "support needs" instead (low, medium, high), which tries to capture more of what is going on. The point is not to police language but to recognize that one word rarely captures a whole person.
"Everyone is a little autistic these days." Autistic traits do exist along a spectrum that includes the general population, and many people recognize echoes of autistic experience in themselves. Being autistic, though, is a specific neurological pattern that goes beyond having occasional autistic traits. This phrasing, while often well-intentioned, can make it harder for autistic people to be taken seriously when their experience is meaningfully different from what neurotypical people experience occasionally.
"Autism is something to be cured." Most autistic adults do not want to be cured of who they are. They want to be understood, supported, and accommodated. The neurodiversity framework treats the goal of support as flourishing rather than passing as neurotypical. People with higher support needs deserve real care too, and that care can be offered without framing them as someone to be fixed. Families navigating significant challenges deserve real support along the way.
"Vaccines cause autism." They do not. The original 1998 study has been retracted, the author lost his medical license, and the connection has been thoroughly disproven by extensive subsequent research. The myth has persisted, but the science is settled.
"Autistic people are like Rain Man / Sheldon Cooper / [pop culture character]." The way autism is portrayed in media has historically focused on a very narrow slice of autistic experience, usually involving savant skills, male presentation, and visible difference. Most autistic people do not match those portrayals. The diversity of the spectrum is much wider than popular culture has shown.
"Autistic people cannot have relationships, careers, or families." They can and do. Many autistic adults are partners, parents, professionals, and active community members. What they need is the same thing everyone needs: relationships and environments that work with how they function, not against it.
If you are working through what your diagnosis means today, working with a neurodivergent-affirming therapist can help.
Book a Free 15-Min ConsultationWhy some people moved away from the term
There are a few reasons many in the autistic community have shifted away from the term Asperger’s. None of these reasons mean you are wrong if you still use it. They are simply the conversation that has been happening, and worth knowing so you can decide how to relate to the term yourself.
The two-tier hierarchy concern. Asperger’s and autistic disorder existed as separate categories during the DSM-IV era. Over time, this created a kind of unintentional hierarchy where Asperger’s was seen as the "milder" or "more functional" version of autism. This framing did not serve the autistic community well. It implied that some autistic people were more worthy of accommodation than others. The shift to a unified autism spectrum (with levels of support need) was partly an effort to dissolve that hierarchy.
The historical concerns about Hans Asperger. This is the harder part of the story. Hans Asperger was a Viennese pediatrician who published his clinical descriptions in 1944, during the Nazi occupation of Austria. Historical research, most notably Edith Sheffer’s 2018 book Asperger’s Children and subsequent scholarship, documented his cooperation with the Nazi child euthanasia program at the Am Spiegelgrund clinic in Vienna. He participated in the selection and referral of disabled children to that facility, where many were killed.
This history is real, and it has been one of the reasons many autistic adults have stopped using the term that bears his name. It is also worth saying clearly: if you were diagnosed with Asperger’s, this is not your fault, and it does not reflect on you. You were a person receiving a diagnostic label that was the medical standard at the time. The history of the man the syndrome was named after is not your responsibility to carry.
Some people, knowing the history, have moved away from the term as a way of distancing themselves from a name they no longer feel they want attached to their identity. Others have decided that the term is theirs now, that it belongs to the people who have lived with it for decades, and that they will keep using it on their own terms. Both responses are reasonable. Both are practiced widely in the community. Neither is required.
The clinical move. Beyond the personal and historical reasons, the practical reality is that Asperger’s is no longer a clinical diagnosis in the United States. New diagnoses use the autism spectrum framework. For adults who want to communicate their experience to clinicians, employers, or others in formal settings, autistic or autism spectrum is the language that current systems recognize. This is a practical reason many people have shifted, separate from any value judgment about the term.
What if Asperger’s still feels like the word for you?
The conversation about the term Asperger’s is real, and so is the range of ways autistic adults are navigating it. Some have stepped away from the word entirely. Some find it uncomfortable because of the history. Others have kept it as a piece of personal history and identity. None of these responses are wrong. This section is for you if you are still working out where you land.
If Asperger’s still feels like the right word for the version of yourself you have known the longest, here are some things worth saying.
It is what you grew up knowing. If you were diagnosed at 8, or 14, or 22, with Asperger’s, the label became part of how you understood yourself for years. Asking you to drop that overnight, in your 30s or 40s, is asking you to revise your self-knowledge in a way that may not feel right. Many people keep the term because it is the one that fits the version of themselves they have known the longest.
The community around it is real. Online forums, books, conferences, and support communities formed around the Asperger’s diagnosis through the 1990s and 2000s. Many of those communities are still active. People found friends, partners, and a sense of belonging there. Walking away from the term can feel like walking away from those communities, which is not a small thing.
Personal autonomy. You get to decide how you describe yourself. This is one of the most basic principles of neurodivergent self-advocacy. If a particular word fits your experience, that is your right. Nobody is the language police on your own identity.
It marks a specific historical experience. Some people use the term Asperger’s specifically to refer to the experience of being diagnosed before 2013, under the older framework, with a particular pattern of strengths and challenges. Used this way, it is a historical and personal descriptor that does not need to compete with the current autism framework.
And if you have decided to move away from the term, that is also valid. Some autistic adults have stepped away from Asperger’s specifically because of the history we covered earlier, and they would prefer the word stop being used altogether. That position is held thoughtfully by many in the community. People who feel this way are not policing your identity. They are making a choice about their own. You can do the same. Both responses are part of how an evolving community works through hard history together.
You do not need anyone’s permission to keep the label that fits you. You also do not owe anyone an explanation for changing it. This is your story to tell, in the language that fits.
Identity-first language and what it means
One of the other significant shifts within the autistic community has been around language itself. Specifically, the preference for identity-first language over person-first language. This shows up most often in the distinction between "autistic person" (identity-first) and "person with autism" (person-first).
Person-first language was developed with good intentions. The reasoning was that putting the person before the condition emphasizes their humanity and that the condition does not define them. For some conditions, this framing makes sense.
For autism, many autistic adults have pushed back. Their argument is that autism is not separate from who they are. It is not something they have, like a disease. It is part of how their nervous system works, present from birth, woven into how they think, feel, and experience the world. Saying "autistic person" honors that integration. Saying "person with autism" can subtly imply that autism is something detachable, undesirable, or unfortunate.
Multiple community surveys have shown that a majority of autistic adults prefer identity-first language. Many autism organizations have updated their style guides to match. At Sagebrush, we use identity-first language by default and follow our clients’ preferences when they have one.
That said, this is another place where you get to choose. Some autistic adults prefer person-first language for their own reasons. Some go back and forth. Some do not care. None of those positions are wrong. What matters is that the choice is yours, not imposed on you by clinicians, family, or anyone else.
What this means for adults today
If you are an adult navigating the shift from Asperger’s to the autism spectrum framework, here are a few things worth knowing as you settle into what it means for you.
Your diagnosis is still valid. You do not need a new evaluation to be recognized as autistic. The diagnosis you received under the DSM-IV translates directly into the current framework. Most clinicians, employers seeking accommodations, and insurance systems recognize this.
You can call yourself whatever fits. Asperger’s, autistic, on the autism spectrum, neurodivergent. None of these are wrong. The one that feels most like you is the right one for you.
The shift in framework has unlocked better support. The current understanding of autism is much more comprehensive than what existed when you were diagnosed. Adult support, neurodivergent-affirming therapy, masking and burnout research, recognition of sensory needs, accommodation strategies for work and relationships, all of these have grown enormously in recent years. There is more available now than there was even ten years ago.
Late diagnoses are still happening, and they are valid too. If you suspect you might be autistic but were never diagnosed under either framework, you are not alone. The history of autism diagnosis shows just how many people were missed by earlier frameworks, particularly women, AuDHD adults, and people whose presentations did not match the stereotype. Adult diagnosis is real and increasingly available.
Working through what your diagnosis means now?
Whether you grew up with the Asperger’s label, were diagnosed more recently, or are still exploring whether autism fits, Sagebrush offers neurodivergent-affirming online therapy that meets you where you are. We use the language you use. We honor the diagnosis you carry. We help you build a life that fits how you really work.
Book a Free 15-Min ConsultationWhat helps in adult support
If you are an autistic adult, whether you were diagnosed as Asperger’s or under the current framework, the kind of support that tends to help is similar. A diagnosis is a starting point, not a destination. Here is what we see making the biggest difference.
Therapy with someone who understands adult autism
Generic therapy can help with anxiety or depression. Therapy with a clinician who understands adult autism, the lived experience of being neurodivergent in a neurotypical world, and the specific issues that come up in late-diagnosed or long-diagnosed adults tends to move things much further. Adult autism therapy looks different from general therapy.
Permission to honor your real needs
You probably tolerated more sensory input, more social demand, and more masking than you needed to for decades. Adult support means letting yourself stop. Wear noise-cancelling headphones. Eat the foods that work for you. Skip the events that exhaust you. Build a life around the nervous system you have, not the one you were told you should have.
Connecting with other autistic adults
Online communities, books, podcasts, in-person groups. Being known by other people who get it, without having to explain the basics, is one of the most underrated supports in adult autistic life.
Working through the grief and the relief
Late diagnosis (or revisiting an earlier diagnosis under a new framework) often brings up grief alongside relief. Grief for the years on the wrong framework. Relief that there is a name. Both are valid. Working through them with someone who has done this work with other adults can be one of the most freeing parts of the journey.
Building accommodations that fit your life
At work, in relationships, in daily living. Real accommodations are not failures. They are care for the nervous system you have. Asking for what you need is a skill that often takes time to develop, especially if you grew up masking. It is worth the work.
Online therapy for autistic adults
Sagebrush Counseling provides virtual neurodivergent-affirming therapy for adults across four states. If you are in one of these areas and working through what your diagnosis means now, working with a clinician who understands adult autism specifically can change a lot. Learn more about our practice in your state below.
Frequently asked questions
Not clinically, in the United States. In 2013, the DSM-5 folded Asperger’s syndrome and several other categories into a single diagnosis called Autism Spectrum Disorder. People who were diagnosed with Asperger’s before that change are now considered autistic under the current framework. Your previous diagnosis is still valid. You do not need to be re-diagnosed. Many people still personally identify with the term Asperger’s, and that is also valid.
Yes. Under the current diagnostic framework, people who were diagnosed with Asperger’s are recognized as autistic, specifically as being on the autism spectrum. You do not need a new evaluation. The change in the manual did not change the condition you were diagnosed with. The framework just got wider and more accurate.
A few reasons. The diagnosis no longer exists clinically, so newer diagnoses use the autism spectrum framework. The previous separation between Asperger’s and autistic disorder created a kind of two-tier hierarchy within the autism community that many people felt did not serve them well. And historical research has documented disturbing aspects of Hans Asperger’s work during the Nazi era in Vienna, including cooperation with the Nazi child euthanasia program. For some people, that history is reason enough to move away from a term named after him. For others, the term is theirs to keep. Both responses are valid.
No. You get to decide how you describe yourself, and you can change your mind whenever you want. Some adults who grew up with the Asperger’s label have shifted to autistic or on the autism spectrum. Others have kept the language they have known the longest. Some go back and forth depending on the setting. None of these choices are wrong. What matters is that the language fits how you really experience yourself, and that you are not being pressured into a label by anyone else, in either direction.
The neurodiversity framework is the idea that human nervous systems vary naturally, and that variation should be supported rather than pathologized. Within this framework, autism is a difference in how the nervous system works, not a disorder to be cured. The framework asks how environments can adapt to neurodivergent people, rather than expecting neurodivergent people to adapt themselves into exhaustion. It centers self-determination, identity-first language, and treating autistic people as the experts on their own experience. At Sagebrush, we work within this framework while still honoring that some clients have significant support needs and challenges that deserve real care.
Whichever feels right to you. Identity-first language ("autistic person") is preferred by the majority of autistic adults in community surveys, and many advocacy organizations have updated their style guides to match. The reasoning is that autism is not separable from who you are. Person-first language ("person with autism") was developed with good intentions but feels distancing to many autistic people. That said, some autistic people prefer person-first for their own reasons, and that is also valid. A neurodivergent-affirming therapist will follow your preference, not impose one.
Your diagnosis is yours. Your language is yours. Your story is yours.
Sagebrush Counseling offers neurodivergent-affirming online therapy for adults in Texas, Maine, New Hampshire, and Montana. We meet you in the language that fits.
Book a Free 15-Min ConsultationYou might also like
If you are autistic, AuDHD, LGBTQ+, or you suspect you might be neurodivergent, here are a few things to know about this post.
You can read it in any order. The table of contents at the top is there so you can jump straight to whatever feels most relevant. You do not have to read it all at once. If anything is activating, please pace yourself and come back when you have capacity.
Your diagnosis is yours. The language you use to describe yourself is yours. Nothing in this post is meant to ask you to change how you identify. The goal is information and care, not correction.
This post is not a diagnostic tool and is not a substitute for a qualified clinical evaluation. If you are exploring whether you might be autistic, working with a therapist or evaluator who understands adult autism is the next step.
If you read this and felt seen rather than diagnosed, that is the goal.
Working through what a diagnosis means, whether old or new, can bring up grief, anger, and exhaustion all at once. If you are in crisis, having thoughts of suicide, or feeling unsafe, please reach out for immediate support. You can call or text 988 to reach the Suicide and Crisis Lifeline. It is free, confidential, and available 24 hours a day, 7 days a week. You can also chat at 988lifeline.org.
If you or someone you love is in immediate danger, please call 911 or go to your nearest emergency room.
This post is for educational purposes only. It is not a substitute for professional diagnosis or treatment. If you want to explore questions about autism, working with a qualified therapist or evaluator can help. Reach out to schedule a free consultation.
