The Diagnosis

After a four month wait to see the Developmental Pediatrician, we finally got a diagnosis: Autism Spectrum Disorder. Even though I had come to terms with the fact that it was Autism more than 6 months prior, it still stung like hell.

The appointment went really well. My husband and I both liked the developmental pediatrician, and felt that he truly got to see Aidan’s current skill and ability level. Before he gave us the diagnosis, I remember being so impressed that my son could now do many of the things they asked of him. He even said “hi” to the doctor as he walked into the room! We were pleasantly surprised. Aidan was doing so much better, but we still had a long list of concerns.

The doctor noticed that we had Aidan on a GFCF diet and asked if it had helped. We told him him about Aidan's sleep improvements and his increase in language within days of going on the diet. His response was, "Well, none of the diet stuff has been proven, and you will come across several people claiming to cure Autism, but ABA is the only proven therapy that allows children to lead a life indistinguishable from their peers." Of course we just smiled and said, "OK" but I knew ABA and therapy alone were not going to get Aidan to were he needed to be. We still had many concerns that I could not see ABA fully addressing. 

Below is a full list of what our concerns were at this time. The concerns with lines drawn through them show concerns that we no longer have, and the ones with asterisk are “symptoms” that have been greatly reduced (just six months later!):

1. Aidan appears to have little seizures at times. Sometimes he will stand in place and tense his entire body, clench his teeth, fits, and shake. We can’t tell if he does this because it feels good to him or if it is something he can’t control. **

2. Aidan has lost words & greetings that he once used regularly (ex: saying and waiving hello and good-bye). He has also lost skills (ex: completing puzzles, being able to draw a circle or line when asked, following basic directions)  

3. Aidan shows new anxieties/fears to once familiar things (ex: climbing ladders at the park, swinging,  walking up stairs that are “open”)  

4. Aidan is easily excitable and helps soothe himself by jumping up and down repetitively in place**

5. 99% of the time, Aidan will not respond to his name. 

6. Aidan seems out of sync with what is going on around him at times. He is in his own world when playing with certain toys or while involved in certain activities. He does not even let his Mother or Father interact with him.  

7. Some OCD behaviors- lining up toys. **

8. When he points out an object (For example, says “cat”), if you respond by saying “yes” or “you’re right!” he will continue to say “cat” until you say it back to him, “yes that’s a cat” or “cat” then he can move on.  

9. Aidan has difficulty running, and an awkward way of walking at times 

10. Hard time transitioning. Will flip out even when we are saying good bye to a stranger.  

11. Inappropriate behaviors with strangers (grabbing at stranger’s face to get attention). Tries to put his fingers/hands/feet in other people’s face **

12. Turns feet in and drags them when he walks/ runs. Seems like a drunken walk  

13. Defiant behavior (you want him to do something- he will pretty much always do the exact opposite)

14. Lethargic when out and about, tons of energy the moment we get home (won’t walk when we are out because he seems too tired)

15. Restless leg syndrome. He is jumping, kicking, and stomping constantly. He CAN’T keep his legs still 

16. Slurred and “made-up” words to ask for things at times. He can’t say words that he has said 100% clear in the past

17. Laughs at nothing.

18. Squints his eyes as if he is having trouble with his vision. Like he can’t see straight

19. Perseveration that redirecting cannot stop (repeatedly saying oops, uh-oh, so big, etc. out of context)**

20. Scripting/Echolalia- will recite lines from Blues Clues or things that my husband and I have said to him out of context

21. No interactive play

22. Unassociated, but consistent behavior or words when upset (now it’s “night” or “done”– used to be clapping & saying yeah)

23. Still not understanding or responding to simple instructions (i.e. hold-on, stay there)**

24. Thinks of timeout as a game – does not understand

25. Aggressive behavior- When Aidan  gets upset over the smallest thing, he will throw his toys, clear tables, bite us, or scratch and hit us. It is very scary and not something we have been able to control. We worry about other people’s safety around him when he gets upset.

26. Obsession with fans- wants to turn on every fan in the house and just watch it spin

27. When he gets upset he cannot be consoled

28. Significant receptive and expressive language delay

29. Has the capability to use a fork or spoon but refuses, he has to touch every piece of food before he will put it in his mouth

30. Will break down crying if certain strangers or “newer” acquaintances approach him or just say hi 

31. Extremely sensitive to certain sounds and when he hears them cannot be consoled. Not necessarily loud or soft sound but gets upset when he hears a cow, duck, or horse sound and cannot be consoled

32. Does not always play appropriately with toys. Will set up his favorite toys on play table in a specific way and then no one else can move or touch them.

Had we come up with this list before starting the diet or working with the Thoughtful House, these concerns would have been on the list as well:

-  Difficulty sleeping. Sleeps approx 5 hours per day.  (Later found out this is a sign of food allergies and/or vitamin deficiencies)

-  Puts constant pressure on his stomach (Later found this was food allergies & bacteria/yeast which caused stomach discomfort- leaky gut, etc.)

-  Spins in circles while looking out of the corner of his eye (Vitamin A deficiency and/or yeast)

- Eye stims – sometimes he would roll his eyes to the side or like he was rolling them in back of his head (later found out that this is tied to Mercury toxicity and Vitamin A deficiencies)

- Overly attached to Mom. I couldn't leave the room or do anything else with out him getting upset. Wouldn't even let Dad put him to sleep at night. EVERYTHING had to be done with Mom.

Looking at this list again makes me realize how far Aidan has come. I am so proud of him, and also proud of my husband and I for not taking "no" for an answer. We still have work to do, and I will not stop until every item on our list of concerns is gone. I look forward to the day when I can have a conversation with my son, and know that he understands just what I mean. I look forward to the day he can come home from school and tell me all about his day. I look forward to the day that I take him to the park and watch him play with other children.

Being the parent of a child on the spectrum can truly be a special thing. I find that I no longer take any of the little things for granted. For so long I took Aidan's ability for granted. I would watch him run, jump, and climb at the park and it was just what he was supposed to do. When he lost that ability, it scared the hell out of me. All I wanted was for him to do  the things that he was once able to. Every little bit of him that we get back, has been twice as special to me. I absolutely LOVE watching him at the park now. It makes me so happy to see him have the energy to run and climb, and use his words to ask me to push him on the swing. Just six months prior to this I was so scared that I would NEVER see him do these things again. 

I know that we are nowhere near the finish line, but I share this information because I want other families to know that you CAN and WILL see improvements in your child. It may take several months or years, but it is possible. 

It upsets me that there are still pediatricians that tell parents their child will never talk, never be able to make friends, and never be able to show their feelings. It makes me upset that there are pediatricians who give the Autism diagnosis and in the same breath say that the diets and alternative treatments have not been proven and are really just a waste of time.  While my son is not recovered, I have seen him go from an angry little boy trapped in his own world, to a boy who can now tell me most of his needs and wants. My husband and I have seen steady improvements since we started this journey, and we know that many of them came from treating his underlying medical issues. It has been a long year of diets, supplements and therapy, but it feels so wonderful to look at that long list of concerns and see that over half of them are GONE. 

My hope is that in another year, all of our concerns will be gone and Aidan will be able to start Kindergarten in a typical class. Both of his ABA therapists have told me that this is an attainable goal, but the school district (mostly people who think there is no "recovery" from Autism), thinks I am shooting for the moon. Watch us prove them wrong...