Speech problems - part of AS?

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My son's speech was never delayed, in the sense that his articulation always tested as approriate for his age. He did not qualify for speech therapy for articulation, but he had language problems from the start and he still has problems with pragmatics. You can understand the words that he's saying, but his message can be confusing unless you already have an idea of what he wants to say.

If your cousin's only problem is articulation, then I wouldn't immediately think it's AS. One of my cousins had extreme articulation problems, but it cleared up with speech therapy before he left grade school. He has had no other issues, except that early articulation problem.

My son has other things besides language issues. He has sensory issues and social delays.

I find it really interesting how all the different places work with the referral and diagnostic process. Some of them definitely seem better than others.

I really like the way our referral process works for our children and families and think it's a great service. Some of you seem to have a lot of difficulty accessing what you need

I work at a specialist child development service where we work with children with high and complex needs.

1. Anyone can make a direct referral ( including parents )
2. The children are seen by a Physiotherapist, Occupational Therapist, and Speech Language Therapist ( referred to others like the dietitian, specialist signing teacher, Early Intervention Teacher. psych etc if needed ) ( a roughly 1 hour appointment - we see the child all at the same time and discuss findings )
3. Once the therapy team have seen the child and made a provisional diagnosis we meet with the paediatrician ( the child has an appointment with the paediatrician on the same day - after the therapists assessment.
4. The Paediatrician and the Therapy team discuss and come to a firm diagnosis ( reports written and created the same day)
5. There is a family meeting arranged to discuss assessment findings with the family and diagnosis given.
6. Therapy is started ( normally within a week or two )

Sometimes the assessment and firm diagnosis happens on the day without the family meeting- so in the space of three hours the family is able to go home knowing exactly what the story is with their child. If the child is more complex, then it is usually about a week from the assessment.
We assess one day a week and have the other 4 days for treatment times. We either work with the child at home or in the clinic or preschool.

Just curious.. what kind of assessment process have you been through ?

Our pediatrician gave me the phone number to our County Intermediate Unit (IU). (By the way, I live in Eastern Pennsylvania). I phoned them and stated that I had a child with a speech delay and sensory issues. I was assigned a "case worker" from the IU. She came to my home and interviewed me, and then made the appointment for the multidisciplinary evaluation to take place at my home. The IU in my county prefer to analyze a child while they are in their most comfortable surroundings, which is their home. At the evaluation were my case worker, a speech and language specialist, an occupational therapist, and an early intervention teacher. The evaluation took two hours, and findings were discussed right at my kitchen table over coffee! The appropriate services were decided upon and scheduled to begin within one month's time. My son David began receiving therapy right in our home! David received a one hour visit each week from three specialists: a speech therapist, an occupational therapist, and an early intervention teacher. They would each bring a large bag with them, filled with toys and items they needed for the lesson plan they wanted to complete that day. Once David turned 3 years old, he was old enough to attend a classroom based program connected with the IU. Transportation was even provided for him at no expense to me, other than paying my taxes each year. Potty training wasn't necessary to attend the classroom setting, by the way. Typical pre-schools require potty trained chidren, but not the IU. David attended the IU pre-schools all the way until Kindergarten, when he was enrolled in our public school system. The public school system is required to provide services for your child if they have an IEP, or an Individualized Education Plan. Our public school system has done an excellent job with my son, who is now in 7th grade and fully mainstreamed. As far as getting a diagnosis, that required seeing a medical doctor who specializes in neurology. Our public school system required a doctor's diagnosis in order to provide tax-payer funded services, so I had David diagnosed at the age of 4. (I must add, however, that even though the team of teachers and therapists who worked with David since he was two years old weren't qualified to give him an official medical diagonsis, they guessed correctly! It was David's speech therapist who first told me she strongly suspected Asperger's.) The age of four is a very early age to diagnose AS, I'm told, but David fit the bill so completely there wasn't much doubt in the minds of the IU team or our pediatric neurologist. Anyway, in order to have David diagnosed by a doctor, we contacted our general pediatrician for a referral. We had to wait three months to be seen by the neurologist, but it was well worth it. The multidisciplinary evaluation performed at the children's hospital by the pediatric neurology team was an eight hour long, intense process! Of course we were given breaks for eating, but even that was part of the evaluation process! An occupational therapist ate lunch with us soley for the purpose of observing David's eating and fine motor skills! Sight and hearing tests were also performed to help diagnose speech and language issues. After another month, we met with the neurologist in her office to discuss the entire team's findings, and if possible, finally get a diagnosis for our son. That's when we were told it was truly Apsperger's Syndrome, and the best news of all was learning that David was already receiving all of the services through the IU that they would have recommend anyway! The neurologist praised us for taking action early with David because early intervention is a tremendous advantage to the quality of life of kids like David. So, I am now an early intervention advocate in my area. Parents who are suspecting their child is special in some way, but are having a difficult time accepting it, are given my home phone number. I act as a mentor to them since I have already dealt with the pain of accepting that my child is aytpical, and I have already learned to navigate the county's IU system and can guide them through the process.

That's the assessment process we went through. It was painful to face the reality that my son was atypical, and many tears were shed, but facing it and getting help early was the best thing that ever happend to us!

Snuggle it sounds like a really good system is in place in your area!
It sounds very similar to ours in many respects. Although here children will get an ASD diagnosis much earlier.
If it is not entirely clear they are given a " provisional diagnosis" so they are able to access various allowances and services.
I'm so pleased to hear you are acting as a mentor and support person to other parents. I am sure they will benefit hugely from your experience. It's always so much easier when you know someone has walked the road before you.
The services seem to vary hugely across the US, and it almost seems like luck of the draw as to what type of services are received, depending on the area you live in.
Does the ADOS sound familiar to you? I am wondering if that is the assessment that your son had. It is the only one I can think of that is that long. We tend to use the ADOS as a tool for those children that are not perhaps as clear cut as others since the administration time is so long and many children do not need to have it done, since the picture is already very clear.
Interesting too that the OT was the one to observe him eating. Here it would be an SLT/OT combo that would look at feeding. Do the OT's in the US have dysphagia training?

Saffy, I fear you are right about the services varying largely across the US. Each state in the US is divided into counties. Each county has it's own early intervention programs. I suppose I was lucky, just as you said, to live in a county and state that offers excellent services as well as making them easy to acquire. There is another Aspie in our family, and he is David's second cousin on my husband's side of the family. His name is Jeremy, and he grew up in Virginia, but later relocated to Delaware with his family. Jeremy's mother and I speak often of our boys, and their schools and services and such. It became apparent to both of us during these discussions that both Virginia and Delaware paled in comparison to Pennsylvania as far as the early intervention services go. It's really disturbing to me that you have to be "lucky" to get the best care for your kids here in America. It just shouldn't be that way. It's very unfair.

I am not sure if the ADOS assessment was used to evaluate David. What does that acronym stand for? Maybe knowing the full name will help to jog my memory. It was 11 years ago now, so I may have forgotten. I'm an old woman of 41 years now, you know?

The SLT did observe David while eating during her evaluation, but only the OT attended lunch with us. I think the reason for that was because the OT was also watching for fine motor skills, such as holding a fork or a spoon. The OT was also interested in David's response to sensory input such as food temperature, texture, and taste. The SLT gave David crackers to eat while she was observing him. I do remember that much. Each evaluator worked one on one with David, probably to avoid overloading him. He didn't do well with strangers at that particular time. I also can't answer your question about OT's in the US having dysphagia training. I wish I could, but I am not certain. To be honest, I don't even know what dysphagia training is!

You also mentioned that a provisional diagnosis will be given for cases that are not entirely clear cut, and this type of diagnosis allows access to needed services. It is the same here. In my last post, I did make it seem as if services would be withheld without a clearly defined diagnosis, but that's not true. I apologize for my poor wording. What is needed to access services here in our public schools is the official report of a medical doctor's opinion that a child is atypical and needs services. I believe that's the case, anyway. That's how I understood it when the IU staff explained it to me. The therapists and teachers told me they are not allowed to diagnose by law because the legal system doesn't recognize them as qualified to do so. (Personally, I disagree, but that's just my opinion.) The early intervention team told me that they believed David was on the autistic spectrum, and probably had Asperger's, but that only a doctor could "label" him with that diagnosis. It was strongly suggested to me, by the early intervention team, that I acquire a medical doctor's diagnosis prior to enrolling David in the public school system. It didn't change any of the services he was receiving, or would get in the future. It only served to justify the public school system spending tax payers' money to service David. You see, once your child switches from early intervention to the public school system, the funds for services come from an entirely different pot of money. I had to justify needing money for David from a new pot by getting the doctor's diagnosis on paper. Does that make any sense? I know it's confusing.

I hope I am answering your questions in a satisfactory manner. I am out of my league, as I am only a mom, and you are a speech pathologist. I am speaking to you in laymen's terms, but you are asking me questions of a professional nature about a profession that is not mine. I mean no offense at all! Please don't misunderstand. I enjoy speaking with you, but I fear that I am not answering your questions with the precision you are used to. I will do my best, but that's all I have to offer.