Autism and Puberty
I hear from parents all the time that they feel anxious, terrified even, at the thought of navigating autism and puberty with their daughters. For those with daughters who can’t stand the sight of blood, the feel of pads or other methods of protection, or the emotional roller coaster that comes with autism and PMS, it can be a tough road.
I know because we have walked it five times now. Once for me, and once for each of my daughters.
We don’t all have autism (that we know of as providers have told a couple of my girls they hit the spectrum, but “not enough” (sigh)), but we all have diagnoses. My post, “Comorbidity: Life with Autism and Its Closest ‘Friends,'” lists some of our issues should you want to see them.
We all struggled to maintain our regular lives, to build relationships, and to preserve our health, both mental and physical, during this time of transition.
Where Are the Resources for Our Kids?
The surprising thing about autism and puberty is that there are so many kids with autism, and all of those kids are going to hit puberty, but just try to locate good information about this time or providers with experience helping these kids. It is all but impossible. I am sure there are some out there, but wow, so hard to find.
Our Journey Through Puberty (The Condensed Version!)
So here is the deal: I am not a medical or mental health provider. I am an autist and a mom of an autist or autists (I won’t know until someone actually knows how to diagnose autism in girls who sometimes make eye contact!).
Our journey has involved a little bit of everything from irregular bleeding to heavy bleeding, breast lumps to lactation, and yeast infections to urinary tract infections. Once the party started, it raged on and on and on…. Raged being the key word.
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From “Not So Bad…”
For me, beginning puberty was mostly difficult from an emotional standpoint. I didn’t have many physical issues other than painful cramps. My emotions were so out of control, however, that I would break up with my boyfriend every month when my PMS hit.
I just sort of needed to escape from anything social. Once I figured out the pattern, I was able to learn to control it, but that poor guy. He responded with kindness, understanding, and a willingness to give me space a day or two every month. A lot of space. Good man.
I guess because I didn’t have too many physical struggles with puberty when I was younger, I didn’t really think about all of the things that could happen. In my girls, puberty took a toll that was much more physical in nature.
…To “Holy Cow!”
My heavy bleeder? She once had a period that lasted six continuous months. Her bleeding would get so heavy she would stand up and a puddle would form at her feet. I don’t have words for how much this scared her. It scared me as well! As her doctors scratched their heads, her bleeding continued. Fast-forward a few years, an IUD, and a hysteroscopy later, its better, but remains a challenge.
Another of my girls experienced lactation. Yes, lactation. Just what every young teenage girl wants in her life. She told me she was having a discharge and, good mom that I am, I was hoping for some type of mild infection treatable with an antibiotic. Nope. Lactation. To this day, a cause has not been identified and a solution has not been successfully implemented.
Violent mood swings? Been there. No, not just emotionally violent, physically violent, which becomes challenging as your kiddos outgrow you. Refusal to engage in proper hygiene? Yep, done that.
We have used everything from birth control pills to IUD’s, from pads and tampons to the cup and period panties.
Another fun note, an IUD does not work if you have a mobile uterus, which you probably won’t know about until you get an IUD.
A mobile uterus.
So not prepared for that in my teenage daughter. Seriously?
There were days it didn’t even feel like managing this was remotely possible. In fact, it felt like it was going to last forever and that somehow I had lost my precious daughters. Their skills seemed to disappear before my very eyes. Their personalities seemed to change overnight.
What did I learn during the process of leading my girls through this journey? More than I ever wanted. So much more than I ever wanted.
Where are we now?
We are emerging wiser, healthier, and stronger. I think there is a confidence develops from surviving a journey like ours. I think we all feel like if we can get through all of this, we can get through about anything.
In the spirit of full disclosure though, while I am super close to three of my girls and totally believe that this journey is one of the reasons for our closeness, I have very little contact with my fourth daughter (her choice, not mine) as we have some ideological differences.
I love her with all of my heart, and I pray regularly that this relationship will be healed and restored. Life is hard, and no one is perfect. I’m certainly not.
I can’t guarantee you a perfect sunshine-and-rainbows outcome, but in the hope of helping you avoid some of the mistakes I made, I have written a free ebook on autism and puberty. I began by trying to write a post on autism and puberty, but quickly found that there was way too much to try to fit into one post.
The free ebook (in the Free Resource Library!) shares our experience and explores the strategies we used to not only maintain our sanity during this time, but to continue to be productive and forward moving.
I never want you to have to go through all that we have been through! There were times we should have sought help sooner, conversations that should have been more direct, and tools we could have used had we known of their existence.
While we did get it figured out (most of it!), I always wonder what it would have been like if only we had known….
What I Wish Someone Had Told Me
I can tell you from experience that the standard information you may be gathering about puberty will only get you part way through this process if you are dealing with autism and other physical and mental health issues.
While the information in the ebook will not pave your journey in gold, it hopefully will make it easier. How I wish I had had someone to share with me the craziness of what was about to unfold as my girls began this journey!
So whether you are in the process of preparing to enter puberty with your daughter, navigating it as we speak, or transitioning to the next step, I hope you will take a minute to head to the Free Resource Library and “check out” your copy of Autism and Periods: Because She’s Gonna Have ‘Em. Period. This resource covers all the “stuff” we learned and applied to get through this tough time.
Some simple things you can be doing now include:
- Continuing to strengthen your relationship with your daughter. A daughter who knows and trust you will be more likely to follow your lead into next steps even when they are uncomfortable.
- Forming good habits, including the habit of forming good habits!
- Working on identifying all of the health issues that have come along with autism and developing ways to minimize their impact. My post, “My Strategy for the ‘Treatment’ of Autism” may help you here.
- Getting to know about relevant providers in your area (gynecologists), so that you are prepared and not scrambling if you need assistance.
- Taking time to learn about disorders that may be comorbid to (come with) autism that arise during the teen years so you can be on the look out for things that may initially look like PMS, but actually are separate and distinct (and often treatable or manageable).
- Learning about ALL of the different types of protection that are available for this time. It is hard to believe we only had one or two things to choose from when now there are gobs!
- Developing a plan for talking to your daughter about the stuff that is coming so it becomes familiar and easy to discuss.
There is so much to think about, but preparing in advance will move you forward more smoothly and more comfortably! Some of it is a little different because of the presence of autism, and some of it is waaayyy different, but with preparation you can absolutely do it!