The truth about being autistic and a mother

I was diagnosed as being autistic this year and wasn’t surprised. It has taken some getting used to, but it was such a real feeling of relief that I cried at my diagnosis—raw emotion just came pouring out of my face.

I felt like I could remove the mask, put down the tools I had been using for so many years to hide who I was, deal with life and start being truly myself.

After repeatedly being misdiagnosed with a range of different mental health difficulties, I was frustrated and annoyed that I did not have the answers to why I found some aspects of life so challenging. At times I felt like I was watching life from inside a goldfish bowl, I did not quite understand how others managed to achieve what they did without the problems and disasters I often seemed to encounter. Certain situations, heightened senses and social interactions were making me have frequent meltdowns, manifested in many different ways, and were causing me to become anxious.

For years I had devised a complicated and stressful ability to camouflage and conceal my difficulties. This ranged from observing and mimicking the behavior and language of my peers, to overworking and overloading myself to a breaking point, in order to complete tasks to a high enough standard that no one would ever notice my struggles.

I would often camouflage for an entire day, resulting in a meltdown as soon as I had got home. I would then have to spend the whole evening in a state of anxiety and exhaustion, attempting to recharge myself for the next day.

My growing inability to change my routine and my frustration at even the smallest, last-minute alteration to something as insignificant as what we were having for tea, was beginning to take its toll on my husband and, to be honest, myself, too.

Then my little boy was born.

When you have children, especially your first child, everything transforms. I didn’t expect everything to change so much, but it did. I struggled, really struggled. Everything was a sensory nightmare: the birth, the noise, lack of sleep, constantly being touched by another human being, breastfeeding, visitors coming to my house all the time, not a moment to think, the mess. There was no stillness, no downtime and not a moment to think.

I was traumatized and I did not know why. I plagued myself with thoughts of, It is you, you’re not doing it right. You should be happy, you are ungrateful, this is what you wanted, make it work, don’t complain, pretend you’re fine.

But I was not fine, far from it.

I used to hide upstairs and scream into the carpet as loud as I could so no one heard.

I used to carry my little boy in his sling and walk for miles just so that he would sleep and I could get a moment to myself.

I used to sit awake all night feeding, loving and caring for him even though at times I just wanted to rip my skin off my body because my senses were going into overdrive and I was touched out.

I thought that going to every single baby group would help me and I tried to get out every day and be around people. This only made it worse. The noise of the baby groups, keeping up with social expectations, trying to understand new relationships with adults when I should have been trying to understand my new relationship with my baby. The fallout of trying to do so much was so epic I had a nervous breakdown.

Piecing myself back together has been a very long process.

Finally, when I was feeling better and had opened up to my family and my doctor about how unbelievably hard I was finding things, it was suggested that I may be autistic and I began to seek a diagnosis. The more I read, the more I understood and the light at the end of the tunnel was getting brighter. I could feel a peace within myself that had never been there before like I was finally getting to know who I really was.

Life after my diagnosis is so much better, I feel like I am finally building a life for myself and my family that is true to who I am.

I talk openly about my difficulties rather than masking my emotions. I can identify which situations I am going to find challenging and will lead to a meltdown.

I know now that it is okay to say “no” to people. I acknowledge and celebrate my differences, difficulties, and achievements and choose to surround myself with people who understand, not those who I have to pretend in front of.

Since receiving my diagnosis, I have given birth to my daughter. I was able to discuss my sensory and communication difficulties with the midwives before her birth and the whole experience was amazing. I have received the support that I should have had the first time around. I am a different person and I am better for it.

I still find situations challenging but my awareness of myself has taken the edge off. These days we do not go to all the baby groups. I am not readily available to every single person who walks into my life because I feel that is how I ‘should’ behave. My priority is my family and I love to spend time alone with my children. I rest, talk with my husband and put plans in place. I have also stopped beating myself up for finding things hard or just needing a break.

Having my little boy gave me the strength to say, “This is really hard and I’m not willing to do this anymore.” I needed answers in order to recognize and address my difficulties in a healthy way.

Having my little girl has allowed me to see the person I really am and I’ve seen firsthand how beautiful and amazing the first year of motherhood can be. I am grateful every day for my children, what they teach me and how they have allowed me to grow. My little boy was loved and cared for just as much as my little girl, but I was the one having a hard time.

Motherhood has broken me and saved me in equal measures.

This is autism. I am still the same person I have always been. Only now I am better because I have more knowledge and understanding of who I am and what I can achieve.

You might also like:

• Autism may be more common than we think, according to a new study from the AAP
• Finding out my child is autistic wasn’t easy—but I learned something amazing about myself
• What moms of kids with invisible disabilities want you to know