For every 44 children born, at least 1 is diagnosed with autism at some point in their childhood. Autism occurs in every racial, ethnic, and socioeconomic group.
When it’s your child, or when it’s you who has lived your life feeling like you don’t fit in but don’t understand why until you receive an autism diagnosis in your adult years, the range of feelings and emotions can vary widely.
When one of our children was diagnosed as autistic four years ago, we knew it didn’t change who he was – nor did we want to change him, but we really didn’t know what it meant for him as he grew up, or how to help point him in the direction of support that may be helpful.
Not infrequently, I’ll have friends and acquaintances reach out to say their child has been diagnosed as autistic, and while that answers some questions for both the child and the parents, it often raises many others.
A recent inquiry led me to ask parents and neurodiverse individuals in the online community, what would you say to someone who was recently diagnosed, and to their parents? What would you want them to know? I thought the insights were phenomenal and share some of them here.
For the child (when they are ready to talk)…
You will find friends with other NDs.
I would share the struggles of growing up knowing I was different, but not knowing how. Of never fitting in, no matter how hard I tried. Of feeling left out, of talking to people who just don’t seem to hear me.
I would share the relief of having a diagnosis, of finally having my life make sense. The joy of finding my people, because I finally understood myself, understood what to look for in friends. The incredible support of online communities, the tear-inducing feeling of finally being UNDERSTOOD.
“Sometimes we don’t want to be neurodivergent because it seems to make us less. This is not true.”
Ingrained ableism is a bitch. We all have it.
Look for autistic resources, and find autistic groups. Non-autistic led counseling and “therapy” groups are often (not always) made to “help” you mask better (act as if you’re neurotypical). Be careful. Be yourself. You’re allowed to. (Don’t be an ass, though – being neurodivergent is no excuse to be a bad person.)
With this diagnosis, you have the chance to explore your true self, because you don’t have to act like you are neurotypical. Don’t let anyone tell you otherwise.
There are a lot of great, wonderful autistic people, who are FIGHTING for their rights, and who I am proud to stand alongside. They are fierce and honest, and they share their insights with others so that every autistic person can really, truly find themselves, and I cannot thank them enough.
Don’t be afraid of your diagnosis. Embrace it. See its strengths of it, and don’t let anyone tell you it’s a weakness.
I would share this… https://www.lilpenguinstudios.com/products/copy-of-communication-and-inclusion-digital-printable-poster-personal-use
We are unique, more unique than NTs. Programs don’t work for us.
Please do not go in for any concept that says ADHD or Autism can be cured. Although the medical community refers to ADHD and Autism as disorders, that is a reference-based statement that means “they are not like us.” And we aren’t. The way our brains work is different and beautiful. We have more sensory channels than neurotypicals. Learning to cope with the extra information while trying to behave like neurotypicals is where we run into trouble.
Living your life and figuring life out is my best advice.
There is nothing wrong with being Autistic AND that is your personal self-knowledge. You have the right to choose who knows you are Autistic and who does not. You have the right to meet the world in the way you want to meet the world. It is okay to not want groups or meetings or identity labels. It is also okay to ask for help with things that are hard for you. You can have both of these. Refuse to allow anyone to shame you if you choose not to meet the world in ways that put the diagnosis in front of you. It should always be your choice how you identify and how you encourage others to identify you. Not participating in “autism things” does not automatically mean that you are ashamed of who you are. You get to choose your identity and it is a sad truth in this world that some people will take one piece of your identity and inflate it into an entire person that is not you.
Don’t be afraid of your diagnosis. It doesn’t change who you are, it just adds more information that you can use to know yourself better.
The people who really matter in your life, the people who really see you and care about you — those are the people who will take autism as more information but not the only thing about you.
If “autism” says one thing but you know that you are something else, listen to yourself. In the end, you are and always will be the only real expert on you.
Never think you are weird. Ever. The diversity of humans spans so far, and now you’re (this is my personal “Label” to help my kids and myself) a declared X-men Member.
A great quote is…You is smart. You are kind. You are important. Regardless of Neuro status, be yourself.
Embrace your interests and sensory needs without trying to suppress them to fit in with others.
For the parents…
If they are happy the way they are, don’t try to change them.
Spectrum Women – Great book.
Unconditional love and acceptance and allowing them to make their own choices (even with mistakes) is key.
In one sentence: a diagnosis does not CHANGE who you are/your child is, a diagnosis can help EXPLAIN who you are/your child is.
I would share that your child did not change with the diagnosis. They will not be lonelier with the diagnosis than without.
Your child may need space to process emotions. They might not yet be ready. It takes time to accept we are different.
They have a chance, now, to find information on the way they are different from others, and they can use that to find those who will truly understand them, and with whom they can truly be themself.
Your child is still the same person with or without a diagnosis. Give them space and autonomy when it comes to processing the diagnosis and deciding *if* any therapies or interventions would be helpful.
Let them be themself. Let them stim. Let them hyperfocus on the things that matter to them and accept less interest in the things they don’t care about. They will be a happier, better adjusted, and less traumatized human if you do. As for reading material, start with books for teens by Jennifer Cook O’Tool and books for adults by Temple Grandin. And stay away from anything that discusses behavior modification. Those programs make life easier for the Neurotypicals around your child. They do not improve life for them.
They need to be free to process their autism diagnosis in their own way. The truth is that we are more isolated than normals, but there is beauty to be found in the atypical life if you know where to look. We will never be normal, and the first step is embracing that.
I would recommend a copy of Unmasking Autism by Dr. Devon Price. Existing ostracism can come from being an undiagnosed ND kid. Framing it as not something that is “wrong” or “needs fixing” could be massively helpful.
They need to be free to process their autism diagnosis in their own way. The truth is that we are more isolated than normals, but there is beauty to be found in the atypical life if you know where to look. We will never be normal, and the first step is eI don’t have to get married or have parties every weekend to have a life I value. I *do* need for the people who are in my life to understand and accept that I value a life with lots of space for contemplation and lots of time for hearing and responding to my quiet inner voice.mbracing that.
I don’t have to get married or have parties every weekend to have a life I value. I *do* need for the people who are in my life to understand and accept that I value a life with lots of space for contemplation and lots of time for hearing and responding to my quiet inner voice.
Only help people fill their lives with people if they clearly want to fill their lives with people. And even then, ask if they want help first.
They might want to meet other autistic people. Consider the double empathy theory – “Autistic people share information with other autistic people as effectively as non-autistic people do…Feelings of rapport between people of the same neurotype accompany these information-sharing benefits – autistic people have higher rapport with other autistic people, and non-autistic people have higher rapport with non-autistic people.”
Regularly take them to groups and events that interest them, you might find neurodivergent friends there, even if They are not yet ready to go to any specific support groups.
Chloe Hayden’s Different not less book might be more age appropriate (for a teen) and might also open them up to realize there are a lot of good autistic female teen role models on YouTube (since it’s written by someone with a big social media following).
They probably need to focus on self-acceptance right now and finding community first. And not ‘social skills training’ and things like that are rarely neuro-affirming.
If diagnosed as a teenager, I may have needed time to process and gravitate more towards online groups.
Asperger / Autism Network (AANE) We are here for you!
Just let your child know you are happy to talk to them if/when they decide to approach you.
And some additional thoughts…
I found all the above insights incredibly helpful, and here are 5 things I’ve learned since we were able to know our son better both because of his diagnosis and because time has given us insight and understanding:
1. The autism spectrum is broad, but there are commonalities among autistic people. His brain is different than someone who is not autistic, but that doesn’t mean his brain is just like other autistic individuals. He is a unique, beautiful individual who sees the world in his own way.
2. Historically many people in the world have been unkind to people with autism – and that’s a gigantic understatement. Atrocities were carried out against autistic individuals as recently as the 20th century, and injustices still occur. IMHO it’s important to know this to understand what they have been up against, and that underlying biases still exist in our society today. What my child needs more than anything are acceptance and support, and I am so thankful that many autistic people now have a voice in our world to advocate in their own words for the interests and needs of autistic people around the world.
3. Lowering my expectations for my child will not help him, and in fact, would be a disservice to him. I need to find effective ways to engage with him and support him so that he can have his very best life, not the life I envision for him, or a life that is lesser than what he’s due and capable of having.
4. It’s imperative to recognize and acknowledge his many strengths. Period. Everyday.
5. Ask him: What he wants, cares about, and what interests him, and give him opportunities to connect with his dad and me, and with other ND and NT individuals through these things with frequency; what he thinks he needs in terms of support; finally, just ask him ‘why’ when he says or does things we don’t understand – why he says and does things is like shining a light on his brain – the answers are often fascinating and insightful.
What did we miss? I know this is a lot, but this mom of an ND family wants to know your perspective.