Living with ADHD and SPD: An Adult’s Perspective

Tammy R. Cook

Introduction

All my life I have struggled with what I know now as ADHD (attention deficit hyperactivity disorder) and SPD (Sensory Processing Disorder). It has only been recently that I have really made a connection between my ADHD and SPD problems. As a child, I always had major problems with gross motor skills. I have memories (more like nightmares) of being made fun of because I could not throw a ball, walk a low balance beam, catch anything or run without tripping. I attended elementary school in the 60s when there was not as much knowledge as there is now about ADHD and SPD. Keep in mind I wasn't diagnosed with ADHD until I was in my 30s and I am now in my 40s. This diagnosis came after so much failure in my life that I had almost given up. I have been called mental, an air head, dumb, slow, lazy, strange, bizarre, etc. My life has been filled with so much struggle it would take a novel to share it all.

Symptoms of Sensory Processing Disorder

I have learned so much about the brain and chemicals in the brain. Before becoming a speech-language pathologist, I worked as a paraprofessional with autistic children. This was also before I was diagnosed with ADHD. I really understood their needs because I had a lot of the same ones. I have often wondered if I might be mildly autistic. I believe that autism, ADHD/ADD, PDD (pervasive developmental disorder), and Asperger's Syndrome are somehow related. I am beginning to see a huge link with these disorders and SPD.

My daily SPD problems include an unusually high activity level (associated with ADHD), gross motor and some fine motor skills problems, over-sensitivity to touch, hypersensitive smell, and difficulties with certain colors and bright light or sunshine. For example, I can not tolerate certain kinds of materials and tags in clothing drive me up the wall. Also, I have to wear lightweight coats and outerwear because I can't stand the feeling of heavy clothing. I do not wear socks unless it is freezing outside. I can’t tolerate certain kinds of panty hose. Certain bright (hot) colors are very frustrating to me. My ability to detect smells is uncanny and at times very uncomfortable. There are certain smells I can not tolerate.

I have a great need for movement and have always been a "rocker" (and not the 1950s kind!). I used to wiggle my foot so hard it would shake the whole bed. My medications have helped in this area. I still have a need to rock myself at times, especially right before it is time for my next dose of Dexedrine. I have a lot of "self-stim" behaviors, such as the need to rock, wiggle my legs and/or feet and also touching or stroking my head/scalp with my fingertips. I like the feeling of the scalp and roots of the hair against my fingertips. It is very calming and soothing to me. These behaviors are embarrassing for me, especially when I am sitting in a school meeting surrounded by educated adults.

Just recently, I experienced the following situation. We had a staff in-service at my school which was taught by a woman who was working on her Ph.D. about thinking techniques and helping children ask good questions. One of the activities involved folding a piece of paper a certain way. Well, just the difficulty I have with fine motor control was bad enough BUT the paper she had chosen to use was a BRIGHT HOT ORANGE! (I was surrounded by people holding and moving pieces of bright orange paper). I tried to focus on the task at hand, but the harder I tried, the more stressed I became. One of the teachers sitting next to me picked up on my distress. She helped me fold the paper. I was ashamed to tell her that the color of the paper was also causing me much of the distress. I left the room and felt so alone. I started remembering my childhood and how much I was teased and made fun of. I finally worked up enough nerve to go back into the room. I wanted to cry but I didn't.

I shared with the presenter a brief explanation of my difficulties and I know she felt sorry for me but I could see the confusion on her face. I do not want anyone to feel sorry for me — I want them to understand! Really understand.

Need for Order and Sameness

Everything in my life needs to be in its place, in a certain way. I have gotten so much better in this area since starting my medications, but I have a long way to go. As I shared with you earlier I am working in a public school system as a speech-language pathologist. This year, due to an increase in students, my principal told me I would have to let another teacher use my room on the days I am at another school. My heart sank...I knew this was going to be hard for me. The teacher happened to be the happy-go-lucky type of person who could care less about order. The first week I came into my room, my folders were not in the right order and I couldn’t find my markers. Some of the items on my desk were out of place.

I was so upset and decided to share my distress with her. As I tried to explain, without telling her I am ADHD, I could see the same look on her face that I have seen all my life. I felt that I had no choice but to tell her I am ADHD. Please don't think I am ashamed because I am not; it is just that I like to have the option of who I tell. In this situation I felt I had no option. After explaining, things were a little better. However, because of my past and also because she is an educated, bright teacher, I felt very insecure around her. She is a very nice person and has really tried to be more understanding to my needs and I am thankful to her for that.

To many people this sounds as if I am a control freak or just really picky. Let me try and explain what triggers these feelings. I am very visual, and I associate everything visually. I feel comfort and security in the fact that things are in a certain order. When things are not where I have put them, I start to feel very anxious and fearful that I have misplaced them. Order gives me the ability to recall and remember. I use order and arranging objects a certain way as a tool — a thinking, recalling, remembering tool. The visual component of arranging objects in a particular order and the consistency of that order is one of my methods of learning. I consider it part of who I am.

Coping Strategies

Every day presents new mountains to climb. I have been using different coping strategies for so long that they are second nature to me. I have good days and bad days. On the really bad days, I try to pace myself and slow down my whole schedule. I use a lot of organizing techniques, and should own stock in those little yellow post-its! To help me stay on task and get things done, I write each chore on a post-it, then I place them in order on my desk. Each time I finish one, I remove the post-it and throw it away. I write down almost everything. Not in whole sentences, just words that jog my memory.

I also use a small hand-held tape recorder. I would not have made it through college without my tape recorder. I had one professor that did not allow anyone to use tape recorders in her class. I went to her and showed her my diagnosis and explained why I needed a tape recorder. Her response was and I'll quote: "ADHD — that's a childhood disorder, you can't be ADHD! Now I have heard everything!" I was crushed and humiliated. I went to my department advisor and she called the professor. I am not sure what she said to the professor, but I was allowed to use a tape recorder.

When I was working on my degree, I had a real hard time studying. I needed movement or the sensation of movement, which is hard to do while studying! I found that playing with a "slinky" while reading and reviewing my notes really helped. I also wrote all my notes on large index cards in red ink. Why red ink, you may ask. I have found (through trial and error) that information written in red ink seems to be easier for me to retain. I am a visual learner and the red ink seems to keep my attention and I focus better. I used a tape recorder, but I still had to write the lecture materials in order to better retain the information. As a child, I didn’t really learn to read until I started using my fingers to trace over the letters in the word. When I recall information, I see it. I can remember the location of the information on a page of a book and then am able to remember it. The process of writing the information (I feel the pencil in my hand and the tracing action of writing the words) also helps me retain information. When having to rely on auditory input, I am at a loss. No wonder I was called an AIRHEAD in school.

Medications have also been enormously helpful to me. My medication management doctor is wonderful and talks to me in medical and technical terms when she explains things about my disorder. I then take this information and do my own research. I take Dexedrine several times a day and Trazadone at night. Just recently my doctor has started me on Zoloft in the mornings. I am peri-menopausal and as of late, have noticed that my ADHD symptoms have seemed to be worse (they are more like OCD — Obsessive Compulsive Disorder). I told my doctor it reminded me of when I was 17 and had just started my menstrual cycle. She told me this was probably due to the change in my hormones and my serotonin levels. Since starting the Zoloft I have experienced a marked improvement.

Personal Life and Relationships

I think that sometimes this area is even more difficult than my outside and professional life. Being a woman in your forties has it own set of issues, then add ADHD and that can be a real situation. My husband is wonderful (this is my second marriage, we were married June 20, 1998, "A.M." — meaning "after medications" were prescribed). It’s hard at times but he really tries to understand.

My tactile defensiveness is a real problem. I know how important intimacy is in a relationship but for me there are times I just can’t handle being touched at all. Also my need for things/objects being placed in a certain order creates problems at times. Once my husband was helping me fold towels, and had put them in the linen closet. I went to put more away and saw that the towels where not facing the right direction (correction: the direction I need them to be facing). I lost it! I started to feel hot with anger and frustration, I wanted to pull all the towels out and redo them. I began to cry. I was expecting the same reaction I used to receive from my ex-husband — to be made fun of, to feel like a lunatic, or yelled at. He didn’t do any of this, he just let me have my space, and calmly and slowly told me it was OK, he understood and would fix the towels the way I wanted them. It made me love him even more. He is truly my soul mate. My husband, who in my opinion is a genius, is dyslexic. We both have had similar struggles in our lives. We both understand the pain.

My husband often wants to cuddle, but sometimes I just can’t tolerate it at that moment. I am able to say that I am tactile and he understands. We have a big oversized rocker/recliner and I love to rock. To have cuddle time, I sit on his lap, and he rocks me. It’s not as intimate as traditional cuddling but it is very bonding. We are close and I am getting some of the movement I need.

One other issue — smells are and have always been an area of difficulty for me. I have the ability to pick up on smells most people don’t even notice. I wash my hair and shower probably too much. I also need others around me to shower often. My children are used to this and they have just followed my example. For my new husband, this is something a little different. He had good hygiene before we were married and now it is even better!

I have never required a lot of sleep. I have always had problems falling asleep. My hypersensitive hearing contributes to not being able to fall asleep. I have found white noise to help some. I used to just use a small electric fan; in the winter I would face it blowing away from me. The sound it produced was soothing and helped me fall asleep. My husband bought me a sound machine. It is great! It makes white noise, birds chipping, the sound of the ocean, etc. I’ve already mentioned how I often need to wiggle my feet or rock myself to sleep. Since my doctor has added Zoloft, this need is not as great. I still need to do this sometimes, on my bad days. This can be very annoying to a partner/husband. I was so afraid that this was going to cause problems in my new marriage, as it had in my first marriage. It is very hard for those without sensory needs to understand. I am happy to say my husband has been very understanding. When it is evident that I am going to need a lot of movement in order to fall asleep, my husband stays up and watches a extra TV program, works on the computer or reads until I fall asleep.

My Wish List for How to Interact With Me

Different resources have been important to me. Driven to Distraction by Edward M. Hallowell, M.D. and John J. Ratey, M.D. was very helpful. I do a lot of research on the web and use many suggestions found on SPDNetwork. I am beginning to understand my needs for sensory input and want to share my observations:
  • Please do not use light, feathery touching. Often I am very sensitive to tactile input and can not stand the feeling of light touch.
  • When giving me instructions or directions, LESS is MORE (meaning use fewer words — just the important ones). When we are just chatting, use all the flowery words you want!
  • Understand that I need movement. Please don’t think I am rude or not interested because I tend to move around a lot. Even when it appears that I am not listening, I am.
  • I have a need for things/objects to be in a certain arranged order. Please do not assume I am picky or just trying to be difficult.
  • Please respect my space. I am an affectionate person; it is just that sometimes I am unable to show it in a socially acceptable manner. I love my husband and children, but often don’t want to be touched or hugged.
  • Please don’t stare at me when I am doing something that you view as odd. Often I am doing what I need to do in order to attend.
  • Understand that I have good days and sometimes REALLY BAD DAYS, like a car that is only firing on two spark plugs instead of six.
  • Please don’t view me as less than, unable, slow, strange, weird, odd, quirky, picky, insensitive, uncaring, touchy, etc.
  • Appreciate me the way I appreciate you, for who you are, all of you, even the parts of you that are different.

Please remember above all…

If I were to give one overall bit of advice to others like me, I would say get to know your own needs and figure out what works for you. Educate yourself about ADHD and SPD. Every day I learn more and more, and I will continue to search for answers. I want so much to make a difference in the lives of children and adults like me. I feel that if I can, I will regain some of my spirit that was taken from me before I was diagnosed. My poem expresses my feelings about how I now see myself in the world.

I Am A Person, Unique and Genuine

Please see me for who I am, and not for what I have been labeled or diagnosed.
I am not an acronym.
I am a person, unique and genuine.
I am not ashamed of my diagnosis; I just don’t want to be seen as my diagnosis.
View me the way I view you, with eyes of compassion and understanding.
See beyond my ODDNESS, beyond my episodes of lack of self-control, my need for movement, my need for sameness, my need for routine, my messiness, and my distractibility.
Give me space, give me time, and give me a chance.
Let me learn how to make it work for me, life that is…..
Help me feel good about myself with all my differences. Let me know that it is OK not to fit in all the time. Love me even on my difficult days.
Understand that I want to conform and make you proud, it’s just really hard for me at times.
I am a person, unique and genuine.
Don’t give up on me. I need you in my corner.
Know that I try, really try to be like him, to be like her. It looks easy it sounds easy, but for me often times it’s not easy.
You know the so-called simple stuff, like:
  • Be quiet
  • Don’t get up out of your seat
  • Listen more
  • Stop playing with that
  • Stop jumping around
  • Stay still
  • Quit daydreaming all the time
  • Stop interrupting
  • Don’t be so angry all the time
  • Don’t be rude
  • Try to be more like him or like her


I am a person, unique and genuine.


About the author:

Tammy Cook, an adult who has ADHD and SPD problems, works in the public schools as a speech-language pathologist. She reports that she is happily married to a wonderful man and has two grown daughters and a precious granddaughter. Tammy can be reached at nnsrt01@aol.com.

Read an occupational therapist’s response to this article: Response to "Living with ADHD and SPD" — An OT Perspective.

Back to Library