Testing for ASD...

[TMcDwyer]

We are in the beginning stages of having my son tested for ASD. Any words of advice you can offer would be greatly appreciated.

 

[quasar4legs]

Hi Taryn,

Just wanted to wish you well as you look for help for your son.
Hopefully someone will be along with more relevant advice soon and don't forget there are lots of very experienced parents on the disabilities board.

Thinking of you and your son

Quasar

 

[TMcDwyer]

Thanks Quasar! I will head over there and check it out.

 

[bookwormde]

If you are testing at age 7 it is very likely that he is very high functioning and that says that you need a very highly qualified clinical team. Only about 5% of the clinicians who try to diagnose these kids are highly qualified and experienced enough to do it accuratly and to provide good clinical recommendations.
You also need to become informed about ASD also since the study of these genetics is advancing so rapidly. I recommend starting with Toney Attwood's The complete guide to Aspergers which is available on Amazon for about $17.
And yes please join all of us ASD parents on the disabilities community board
bookwormde

 

[Celidh]

I had my son tested last year. He is 11. The diagnosis was Aspergers. He is very smart and very high functioning. Most of his issues revolve around the social setting. He basically has no friends. I feel for him. He also has some sensory issues and food issues (again sensory) and basically could talk the ear off of a deaf person. He just keeps on going and doesn't clue in that people aren't interested in what he is saying. He is also very inquisitive and asked questions constantly. Hard ones that require lots of thought that I really don't know the answers too.

It can be a tough frustrating road but sometimes having an answer or diagnosis for your child is better than knowing something is off but not knowing what. I went through years of teachers telling me I needed to take him to the doctor to get him meds for ADHD. Well, he does have attention problems and does take medication for it, but that was not the diagnosis and I knew it. I just didn't have the $1,500.00 to pay for the testing until last year and the school didn't offer to do it. sometimes I wonder if it would have been so much better for him to be diagnosed and tested at a younger age like your son.

Hang in there and know that you love your child and he loves you and although it may be hard, this is in his best interest.

 

[Princess Sara's Mom]

Augh...I feel for you. We were down that road just 2 years ago--interestingly, I started noticing things at Disney when I saw how my dd would react versus the other kids [fireworks, loud noises, etc.]--there had been red flags before, but that trip confirmed it for me and we got a diagnosis from Kennedy Krieger http://www.kennedykrieger.org/ and Johns Hopkins.

On the plus side [ mom, if there is one...], I see you are from Colorado--there's an EXCELLENT contact over there in Denver and I would go there. Lucy Jane Miller is very well known in the ASD & sensory integration world.

http://www.starcenter.us/?gclid=CKmEq_bCm6oCFQPc4AodAS8TzQ

Sending you love & support & a hug from across the country...

 

[TMcDwyer]

Thank ou all so much. I will come check out the boards you mentioned. We worked with our Pediatrician to find a place to evaluate him where the people were highly qualified and made me feel safe. We also decided to pay for it out of pocket. It won't be easy, but we will make it work. We had his first round of evaluations on Thursday and his second round is tomorrow. (It is amazing how quickly these things can move when you leave insurance out of it.) I had a moment on Thursday when I was filling out some forms and it hit me that my son was being tested for ASD. I went and cried in the bathroom for about ten minutes.

Thanks again for the support. You have no idea how much it means to me.

 

[Princess Sara's Mom]

Thank ou all so much. I will come check out the boards you mentioned. We worked with our Pediatrician to find a place to evaluate him where the people were highly qualified and made me feel safe. We also decided to pay for it out of pocket. It won't be easy, but we will make it work. We had his first round of evaluations on Thursday and his second round is tomorrow. (It is amazing how quickly these things can move when you leave insurance out of it.) I had a moment on Thursday when I was filling out some forms and it hit me that my son was being tested for ASD. I went and cried in the bathroom for about ten minutes.

Thanks again for the support. You have no idea how much it means to me.

Wanted to check in on your mom! When we first got the diagnosis, I didn't know where to start, but I wanted to pass along this link for info:

http://www.autismspeaks.org/family-services/tool-kits/100-day-kit

I know when we got the diagnosis I wanted to find out as much as I could and turn my anger, disbelief, disappointment, etc. into something constructive. [However, that realization probably came a few months after my--what I can only describe as...mourning.

Hope this helps!

 

[TMcDwyer]

His evaluations are done and our parent follow-up meeting is on August 15. Until then we wait.

 

[kylmac]

Just sending hugs your way! Our son is autistic and we knew by the age of 2 that something was not right. It gets easier to accept as time goes by but it is still a hard pill to swallow. Staying positive does not come naturally for everyone and every day is different. Go over to the DISabilities board-great people over there for support-you have found support here as well.
Take care-Elizabeth

 

[Celidh]

His evaluations are done and our parent follow-up meeting is on August 15. Until then we wait.

The waiting is the worst. I wasn't surprised with my ds's diagnosis of Aspergers. I had done lots of research with respect to his different issues and suspected Aspergers/Autism. His symptoms didn't quite fit the ADHD that his teachers had always suggested. He's got too many things that didn't fit that, especially sensory issues and social issues.

It all comes together in the end and it is good that you will be getting your son the supports he will need.

Keep us posted. Our thoughts will be with you.

 

[TMcDwyer]

Thanks. Here is our story. There are a lot of little things that over time added up to something being off...

There was not one thing that made us decide to have Ethan evaluated. It was a progression of little things that made me realize that maybe he needed help. It all started in pre-school. The teachers noticed that at recess time Ethan would sit on the side of the playground and watch the other kids play without ever joining in. We decided at that time to do a Child Find evaluation for him. (Child Find is a state funded early intervention program.) He did not qualify for any services. We also noticed in pre-school that he did not like to be touched lightly. If a teacher gently touched his shoulder to get his attention he would FREAK OUT! Now if you firmly grip his shoulder he is fine. We also noticed that when he hugged you he would back in for the hug instead of hugging you front on. He also has trouble sitting still so we got him a special cushion to sit on at meal times and a fidget (basically a spiky ball) that he could hold in his hands at circle time at school.

On to Kindergarten, Ethan had a lot of trouble the first few weeks with separation anxiety and it manifested itself in accidents. Again we noticed things like the fidgeting and the lack of social interaction with the other kids. He had trouble paying attention in class (beyond the usual 5 year old boy stuff), however if you asked him about it later he could almost always tell you what the teacher had said, almost word for word. We had him evaluated by the school psychologist and she agreed that he had a social/emotional developmental delay and has started working with him once a week.

On to First Grade. Ethan was pretty much the same socially, with the exception that he made a best friend. Benjamin. They seem to get along really well and Benjamin is really protective of Ethan. It is really sweet actually. Some other small things began to happen. Ethan seemed to lack impulse control. For example, a kid cut in front of him in line on the way in from recess and Ethan pushed him. This is pretty common. He is not overtly aggressive, but when he gets upset he can't think rationally and can't seem to control his body. He is also easily distracted. In first grade students are allowed to leave the room to go to the bathroom whenever they have to go. Ethan started using this as a excuse to get out of his seat and would be wandering in the hall when someone went to look for him. He was then given certain times when he was allowed to go to the bathroom (unless it was an emergency and he does know the difference. He was also given a certain stall that he had to use to help him focus and stay on task. There was another boy in his class who had the same situation and had his own stall. One day Ethan went into the bathroom and the other boy was in his stall. Instead of going to get the teacher, Ethan smacked him on the bottom. When we talked about it later he said that he should have gotten the teacher, but he does not know why he didn't. Again...lack of impulse control. In February the school called a meeting and asked if it was okay with me if they evaluated him for an IEP. I said yes immediately, but I got the impression that most parents are against this. I guess I understand their point of view on this, but to me it seemed obvious that if her needed help and the school was willing to provide it to him that I should take advantage of it. His evaluations happened and we learned that he has a Emotional Disability (which seems like a really generic phrase to me), he has a slight speech impediment, and he lacks the ability to carry on a progressive back-and-forth conversation. It was something that I had never realized before but it is spot on. He can talk to you, but really can't talk with you.

There were other little incidents throughout the year and there came a point where I came to the conclusion that we had to get him evaluated medically. It was ironic really because a few days after this thought occurred to me, the principal called and wanted to schedule another meeting with me. I remember when he started talking he seemed so nervous. He said something about how he and the staff at school could not make medical dx and I realized that they were wanting me to have Ethan tested. I think it would have been hard if I had not come to the conclusion on my own, but I found it to be almost a relief because they could tell me how to go about it and I did not feel so isolated.

I set up an appointment with my Pediatrician and he was AMAZING! We talked for over tow hours and he made me feel like it was all going to be okay and gave me the names of some centers in the area that can do the testing. (We decided to do it privately so we did not have to wait on long lists to be seen and wait forever for insurance approval.) I had my parent meeting yesterday and the center I chose seemed like a great place. They said that Ethan would have to go through a Neuropsycholgical evaluation which would take place in two three hour sessions. I decided I wanted to move ahead. He had his first session last Wednesday and his second session on Monday. We go back for our follow-up on Aug. 15.

Wow...that was long! Probably more info than you wanted but that is our story.

 

[Celidh]

I'm glad things are coming together for you.

You mentioned the IEP and that you get the impression that some parents don't like it. For me, I think it is great. It gives the school and me and his dad a chance to look at what Jacob needs and how to get there.

I can't say how things are in your area, but here in Nova Scotia where I am, the school will do absolutely nothing for you without a professional diagnosis of some sort or another. So, no matter how many teachers tell me that my son has something up, they know it and so do I, they will not give him any extra supports unless I have him tested and he is not bad enough that they school board would pay for it. Of course, that leaves me to pay. Basically they want that label. I can't say I am nuts about labelling children just to get supports when it is so blatantly obvious that a child needs some sort of help in their school setting. It is frustrating. What if I couldn't afford the testing? He would just slip through the same cracks my older ds has. I could have had it done through mental health probably but there is over a years waiting list. Again, he is not severe. He is very high functioning and is very smart so now that he has settled down on medication for his attention symptoms he gets really good marks. They work mostly on his social skills at school, there are no educational supports on his IEP.

If only he could find a good friend. He gets teased a lot at school and it really gets to him. Sometimes he is in tears a couple times a week. Just the other day he was crying about what goes on at school. He has more than month to go before he goes back. He worries me. He said sometimes he feels like he can't take the teasing and that he will lose it on a kid, probably a smaller one. He is such a kind hearted child who is always worried about hurting someone else's feelings and thinking of others first, so when you take this quality in him into account, his statement is very scary.

I hope your boy gets all the help he needs and you too.

 

[two*little*birds]

Thank you so much for this post. I am going through the exact same thing, except we haven't started the testing process yet.

My son is almost 9, and we always though he just had some degree of ADD (not ADHD). Just recently I started researching ASD and almost 85% of the common traits can be linked to my son's behavior and personality.

For him it boils down to two things, (i) inattentiveness, and (ii) lack of social graces / skills. He's very much an introvert, and he's never really had any friends other than his sister – this truly breaks my heart. I know other kids think he’s weird and they don’t want to interact with him, which breaks my heart.

I am going to follow this thread and also plan to visit the disabilities board. I am having a hard time coming to terms with all of this, regardless of what the diagnose will be. But you’ve done the right thing in reaching out to others.

 

[TMcDwyer]

Thank you so much for this post. I am going through the exact same thing, except we haven't started the testing process yet.

My son is almost 9, and we always though he just had some degree of ADD (not ADHD). Just recently I started researching ASD and almost 85% of the common traits can be linked to my son's behavior and personality.

For him it boils down to two things, (i) inattentiveness, and (ii) lack of social graces / skills. He's very much an introvert, and he's never really had any friends other than his sister – this truly breaks my heart. I know other kids think he’s weird and they don’t want to interact with him, which breaks my heart.

I am going to follow this thread and also plan to visit the disabilities board. I am having a hard time coming to terms with all of this, regardless of what the diagnose will be. But you’ve done the right thing in reaching out to others.

Your post describes my Ethan perfectly. We had his formal evaluation and on Monday we found out that he was officially diagnosed with Aspergers and ADD. It was the news I was expecting, but I have found that I was not as ready for it as I thought I was...

 

[treehugnmama]

It can be hard to hear even when you are expecting it. It is normal to go through denial anger sadness and acceptance. (not necessarily in that order). Give yourself the time you need. It gets better. I have a 7 year old dd with aspergers and am on the year long waitlist for my almost 5 year old son.

 

[TMcDwyer]

It can be hard to hear even when you are expecting it. It is normal to go through denial anger sadness and acceptance. (not necessarily in that order). Give yourself the time you need. It gets better. I have a 7 year old dd with aspergers and am on the year long waitlist for my almost 5 year old son.

The waiting would KILL me! We decided to pay for the evaluation out of pocket and the whole thing took less than a month. At least now we know and we can get him the help he needs...

 

[kehlyrsmom]

We have two on the spectrum and the best thing is to get them tested as early as possible so that you can get things in place in the school setting to ensure that they have the supports in place that they need. Our daughter who is 11 was diagnosed offically at age 7 with Aspergers she had been diagnosed in Kindergarten with ADHD and had been on meds for that but we knew something else just was not adding up.

Our son age 9 was diagnosed at age 3 with Moderate Autism and apraxia of speach. We where told he would never talk. But with several hours of OT, speach, feeding thearpy a week he finally started talking about 1 1/2 years into his thearpy which we started around age 2 1/2 so he was almost 4 before he spoke his first word. He is very talkative and outgoing now and will pretty much go up and talk to anyone. So while his diagnosis is more severe he is more social and has more friends then my daughter who is higher funtcioning. She has one friend and that one friend I unfortunately have not encouraged much because this friend has not been a very good friend to her.

 

[two*little*birds]

The waiting would KILL me! We decided to pay for the evaluation out of pocket and the whole thing took less than a month. At least now we know and we can get him the help he needs...

We too are going to offer paying out of pocket if we find the wait/evaulation period wait list is too long.

For those children already diagnosed with AS how are they doing in school? Academically I mean?

 

[TMcDwyer]

We too are going to offer paying out of pocket if we find the wait/evaulation period wait list is too long.

For those children already diagnosed with AS how are they doing in school? Academically I mean?

Ethan tests very high academically, but he does struggle day to day in the classroom. It is just hard for him to focus his attention on the task at hand sometimes. It is something his teacher is aware of and she has some strategies to work with him. I really hope that second grade is his year.