The Mess of Autism

There is a big pile of confusion over Asperger’s, Autism and functioning labels (high and low) that causes many difficulties for parents.

The only clinical difference between Autism and Asperger’s is speech delay around speech milestones, and that does not necessarily mean mutism or selective mutism—it could literally mean partly delayed speech.

The two are inseparable past that point, because they are essentially the same thing. There is no identifiable difference between an adult diagnosed with Asperger’s and an adult with a diagnosis of High-Functioning Autism.

There are myths around Asperger’s that stem from the original decisions by Hans Asperger, who chose to separate the intelligent from the not-so intelligent. (The Nazi government funded and directed him, and that’s a whole other story.)

The High and Low Functioning labels were intended to separate out Autistics with an IQ under 70. Now though, societally functioning labels are used by people and professionals to designate one’s ability to function in society.

It’s rubbish.

All Autistic people are individuals.

We are all different, and function differently on a daily basis.

Autism is Autism. Though certain people have better support structures and coping strategies than others, the underlying Autism is the same. It just affects different people differently, often with a co-morbid condition exacerbating the problem.

The biggest factor for the removal of Asperger’s from the DSM V diagnosis criteria was pressure from the Autistic community. A significant proportion of us see the separate labels and functioning labels as divisive and harmful.

I was at a conference a couple of weeks ago where an Autistic man diagnosed a year ago introduced himself as High Functioning. He then went on to tell his life story, which was the typical tale of depression, isolation, career going well until changes, suicide attempts, burnout, etc.

I spoke next and I asked him why, after all that, he considered himself High Functioning. Clearly, he hadn’t been functioning in society at all. 

He replied: “That’s what I was diagnosed as.”

There is a clear lack of understanding of what Autism is and how society harms us as Autistic people.

There are no separate High Functioning and Low Functioning people. Asperger’s and Autism are indistinguishable from each other, and so are the same. There is no mild Autism, or severe Autism; there is only Autism and the ability of the individual to prevent societal norms from crippling them.

The vagueness of all this, and the misunderstanding and myths around it, just serves to confuse Neurotypicals as well as pre- and newly diagnosed people. It puts a barrier up between all of these groups and already established Autistics.

People complain that Autistic people are hung up on labels when we actually aren’t—we just want them gone.

The full version of this article first appeared here.

What Is the ‘Best Age’ to Get Diagnosed With Autism?

Last month, I accompanied my husband to an appointment where he was finally diagnosed with autism spectrum disorder. He’d had months of assessments to get to this place. What is particularly interesting about my husband’s diagnosis is that he is just weeks away from being 60 years old. 

He lived his whole life having autism and not knowing it, yet always feeling that he was different. 

In contrast, our son was diagnosed at 3 and our daughter, the month before her fifth birthday.

It all got me thinking: What is the best age to be diagnosed if you have autism?

Here are some pros and cons of being diagnosed with autism at different ages.


I would classify my son as just a toddler when he was diagnosed.

The advantages of being diagnosed as a toddler:

  • Access to early intervention, which has been proven to enhance children’s development.
  • May make securing the right schooling later easier.
  • Allows parents the opportunity to “come to terms” with the diagnosis sooner, meaning they are often more positive about their child’s diagnosis.
  • Parents can learn strategies for better parenting a child on the spectrum sooner.
  • Financial support may be secured sooner.

The disadvantages of being diagnosed as a toddler:

  • A child or adult has a lifelong diagnosis “label” that may not adequately explain their current difficulties because they were diagnosed so young.
  • Schooling and education could base a child’s capabilities on what is written in a diagnosis report that is no longer relevant to the growing child. This could limit their opportunities and experiences.
  • Diagnosing too young may increase the chances of an incorrect diagnosis being given, which is damaging and dangerous.
  • Parents may limit their child based on a diagnosis alone.

Pre-School Years

This was when my daughter was diagnosed.

The advantages of being diagnosed as a preschooler:

  • Not yet too late for early intervention, which research has proven to help.
  • Makes securing the right education easier.
  • Gives parents time to learn and understand about autism and adapt any parenting strategies required for the child’s needs.
  • Allows school to prepare better and have adaptions in place for the child starting formal education (if required).
  • Gives everyone a better understanding of the child’s needs.
  • The child will grow up with a better understanding of why they may be “different” than others, which lessens their susceptibility to mental health struggles later in life.
  • Financial support can be secured more easily, if it’s required.

The disadvantages of being diagnosed as a preschooler:

  • Lifelong diagnosis given to a young child who may develop and grow to the point the diagnosis no longer matches their needs.
  • Some challenges with autism do not manifest fully until later, so may have been missed and need reassessing later.
  • The child may be limited by educators or parents based on a diagnosis alone.
  • The child may miss out on opportunities such as mainstream education because they have been “labelled’” as autistic.
  • The child may always see themselves as different from a young age, so they might exclude themselves as a matter of habit.

Primary School Years (Ages 5–12)

This is when the majority of children currently receive their diagnosis.

The advantages of being diagnosed in primary school:

  • Better and clearer understanding of the implications and complications of any diagnosis, so it’s more likely that co-morbid conditions such as ADHD, anxiety or learning difficulties are correctly diagnosed.
  • Education can still be better tailored to suit the strengths and weaknesses of the individual.
  • Diagnosis route is often quicker because there is more professional support.
  • As the child ages, diagnosis will likely better reflect further difficulties the child may face and be more meaningful.
  • The child is likely able to understand (or begin to understand) their own diagnosis, which has proven to be beneficial for their own mental health.
  • Not too late for financial support to be put in place.
  • Still time for parents to gain understanding and adapt parenting techniques as required.

The disadvantages of being diagnosed in primary school:

  • The diagnosis route may be hindered if school does not see any difficulties, but family does.
  • Some children (especially girls) have already learnt to mask and copy, so spotting traits can be more difficult.
  • The child may have to move schools as the extent of their diagnosis means mainstream cannot adequately support them.
  • Children can suddenly feel different than their peers, which can be upsetting for them.
  • As a child ages, it can become far more of a challenge to help them with anxiety or repetitive behaviours because these likely have become a habit over time.
  • Some schools do not support children well, which can lead to bullying.

Teenage Years (13–19)

These are challenging years for most, but even more so for those on the autism spectrum.

The advantages of being diagnosed as a teenager:

  • Teenager may see a diagnosis as liberating, helping to explain who they are.
  • If diagnosed and supported well, it can give some teenagers a reason to be proud of themselves and help them become more self-aware.
  • Parents may find a diagnosis at this stage a relief that the struggles their child may have had were not due to “poor parenting.”
  • Future careers can be planned around the young person’s skills and strengths.
  • Support can be put in place to help socially or educationally, as required.

The disadvantages of being diagnosed as a teenager:

  • Self-esteem can be problematic, as teenagers feel let down and failed by a system that did not pick up on their struggles sooner.
  • Diagnosis is usually discussed at this stage due to a crisis that could have been avoided if diagnosed sooner (mental health issues, violence, self-harming, etc.).
  • By this point, the teenager could be very socially isolated or have an identity crisis that requires extensive support.
  • Securing financial help can be difficult due to the young person’s age.

Adulthood (19+)

As knowledge of autism increases, more and more adults are being diagnosed in their twenties, thirties, forties and beyond.

The advantage of late diagnosis as an adult:

  • Finally understanding and explaining much about their life, bringing a sense of relief.
  • Mental health may improve as the adult finally understands themselves.
  • People may become more tolerant due to the diagnosis.
  • May perhaps be entitled to some financial support depending on severity of diagnosis.

The disadvantages of late diagnosis as an adult:

  • Anger and frustration at not having been diagnosed sooner.
  • May have acquired a long list of previous diagnoses, such as anxiety, depression or eating disorders that could have been greatly improved with an earlier diagnosis of autism.
  • Lack of support may have meant academic underachievement and socially limiting life experiences.

Having all of my family diagnosed with autism has, by far, been a positive experience for my family regardless of what age my children and husband were diagnosed. For us, diagnosis has brought answers, understanding and support, and changed how I parent. It is about grabbing onto the positives and running with them, no matter at what age you get the diagnosis.

There really is no “best age” to get diagnosed because every person is an individual and every circumstance is unique.

If you think your child (no matter what their age) or you, yourself, may be on the autistic spectrum, seek out professional support via a doctor, as it really is never too late to know.

Three, 5 or almost 60… It was the right time for them, and that’s what matters most.

I Have This Thing Called Autism

Fourth-grader George Yionoulis made a video to help his classmates understand “why he does the things he does” because of his autism. The video is a compilation of photos and videos of George through the years, accompanied by a soundtrack of music he created.

“Let me tell you a little about myself. I have fun dancing, I have fun making music, I love to draw and make art, anddddd… wait for it… I have this thing called autism.”

George goes on to explain many of the things he might do in a given situation and why. He also talks about the tools (gum, headphones, focus) that he uses to help himself. The video is a wonderfully clear and honest look at George’s autism (His mom is quick to point out that, “This is just his own experience, and should not be taken as a blanket explanation of autism.”), and he invites his classmates to feel free to always ask him if they have a question about why he does something the way he does.

Although George didn’t talk until he was 3 years old, he’s got a lot to say now, and the video showcases both his talent and his sense of humor.

How Raising an Autistic Child Has Challenged (and Strengthened) My Marriage

This month, my husband and I will celebrate our twentieth wedding anniversary.

Twenty years ago, I wasn’t concerned with the latest autism research, inclusive education or fighting for disability rights. I was worried about my weight.

My wedding dress fit perfectly except for an ugly bulge of belly fat. Three weeks out from W-Day, I started an emergency Slim-Fast diet, replacing meals with eight ounces of pink, strawberry-flavored froth.

By some twist of logic, I persuaded my fiancé to diet with me. It wasn’t fair, I protested, that brides have to starve themselves into Barbie-sized dresses while grooms get to marry in the relative comfort of suit pants. I railed against unrealistic images of feminine beauty, sexual double standards and the objectification of women until he said, “Alright. I’ll do it.”

Every night for three weeks, we power-walked around our Chicago neighborhood, returning to our battered, shoebox-sized apartment. We’d roll out the TV cart, crack open two cans of Slim-Fast and watch countless episodes of Mad About You. We couldn’t wait to be married, simply so we could go back to eating solid food.

Fourteen years later, we were blessed with a son. It was a difficult conception and a near-catastrophic birth, followed by several years of anxiety about his development. By age 2, it was evident to me that our son had challenges and required more help than we alone could give him. My husband disagreed.

For several months, we stayed up most nights arguing. We fought over the inconceivable question of whether or not there was something “wrong” with our child. I maintained that our son’s behavior was out-of-the-ordinary and we needed to intervene now. I cited as evidence the increasing number of “incident slips” being sent home from our son’s preschool and their urging to get him evaluated.

My husband agreed our son could be intense and difficult to manage, but not exceptionally so. Lots of boys act up, he insisted. He wanted to hold off on any kind of evaluation to see if our son’s issues would resolve themselves over time. He didn’t want some doctor mislabeling or meddling with his boy. He accused me of over-reacting; I accused him of denial.

The distance between us grew. In the past, we’d always been on the same team. Whether partaking in a ridiculous diet, facing a family death or undergoing infertility treatments, we’d endured our struggles together. Now, when the stakes were highest, we each felt abandoned by the other.

The turning point came late one night after a prolonged argument. We each lay in bed, staring up at the ceiling in a silent stalemate. We had reached that devastating precipice in a marriage where there is nothing left to say and the future feels uncertain.

Finally, I turned and faced my husband. It was as though I was seeing him for the first time in months. His eyes were red and swollen and his forehead deeply creased. His look devastated me. I saw in it a mirror of the worry and anguish I thought I carried alone. He clearly felt it too. Seeing him so vulnerable stripped me of my own defenses. I began to cry.

“I’m so scared,” I said. “I love him so much. I don’t know what to do.”

“Me too,” he said.

We reached out and held each other tightly.

I can’t say we’ve agreed on everything since. When we do disagree, it’s this place we try to return to: a place of joint tenderness and vulnerability, of being held together by our fears but united in our love for our child. Neither of us would ever accuse the other of not loving our son. We both want what’s best for him even when we disagree on what that is.

I never lost my belly fat. Two kids and 20 years have only added more bulges. Still, I might purchase some Slim-Fast for our twentieth anniversary. We can split a can, watch reruns of Mad About You and remind ourselves of the challenges we have overcome.

The original version of this post was published here.