Experiences with Autism?
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Anonymous
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My younger DS was just assessed yesterday for special education preschool ...he'll be 3 in early April. We used to live in the DC area and I frequented DC Urban Mom a lot when I was going through infertility, but since we've moved to Colorado, I have yet to find anything as great for support ...so here I am. My husband and I are both ADHD as well as my older son who was diagnosed this past summer (go figure). My younger DS showed signs of a feeding delay at around 7months when he wouldn't eat the solids I tried to feed him or mouth any toys. He was identified as having a feeding delay at 12 months and a speech delay by 15 months. He's received speech and OT since those times and although both therapists agree that there are red flags for Autism, both of them have indicated they think his issues are more isolated to sensory, since his skills in some other major Autism related areas do not indicate a problem.
His assessment to qualify him for special education preschool was one of the worst experiences I've had since I've had kids, but basically they indicated he needed further testing for Autism. I sort of expected that, but it was more the way they approached the subject that made me feel like I was just an idiot for not seeing how obviously Autistic he looks. I felt like they just took one look at him and then didn't believe me when I talked about all the things he could do and I couldn't help but get a little defensive and frustrated. It was such a belittling and lonely experience and I cried all the way home. Since then, I have been looking at youtube videos of parents of children with Autism and Autism professionals describing symptoms and children demonstrating them, and more and more, I am thinking maybe he is Autistic. There are some distinctive things about him (mainly a very clear interest in engaging with other kids and familiar adults) that lays an argument against Autism, but more and more there are just too many little things that seem to indicate for it. My DH and I have already decided to look into getting a medical diagnosis for him, but in the meantime, I was wondering if there was anyone out there that might have some advice or could point me in the direction of resources and support. What was the emotional process for you like? What do you wish you knew at the beginning of your child's special needs journey that you know now? Any positive support and/or advice would be greatly appreciated! |
Anonymous
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First, he would need to be diagnosed. The school doesn't do that, they can only speculate. Has his pediatrician never said anything? I'm not familiar with Colorado, but you should talk to his pediatrician about possible autism and the pediatrician should be able to give you info on how to proceed.
Also, that feeling is typical for those of us who had no idea, or couldn't believe it. I was in denial at first. Took a little while to breathe it all in. Take it one step at a time. |
Anonymous
Don't trust the schools. They get autism wrong all the time. Get the medical diagnosis and go from there. |
Anonymous
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OP, you can trust the schools in so far as getting support services. At this point he can be coded as "Developmental Delay."
I'm not familiar with Colorado, but I would suggest getting in touch with your local or state chapter of ARC: http://www.thearcofco.org You need to see a developmental pediatrician. ARC might be able to point you in the right direction. ST and OT issues could be symptomatic of more than just autism (and are not always present for kids with autism either). Bottom line, he may need the same services whether his diagnosis is autism or low tone and a language and/or communication disorder. I have a kid who has ADHD (extreme) and a communication disorder. He's not on the spectrum, but his therapeutic trajectory would be the same regardless. It's no picnic either. So there's no need to search for a smoking gun to prove it isn't autism with the school at this point. Get as much support as you can in terms of services. |
Anonymous
This experience is quite common, unfortunately. Take it one step at a time, OP. It may be autism or it may not be. My son had an extreme speech delay at 3 and as a result acted in some ways that suggested autism (e.g., had little interest in socialization, no imaginary play, etc.). As his speech improves, his autistic traits seem to be disappearing...so perhaps never was autism or he is just on the higher functioning side of the spectrum? We're going in for our developmental pediatrician appointment in a month or so and I guess we'll see what they say. But the school district is quick to say autism at least in my and my friends' experiences. At this point, I don't think the diagnosis is as important as working on the areas where he is delayed in his development. |
Anonymous
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If you are near a university town, ask if there is a good developmental evaluation clinic there.
And as an older mom (my ASD son is 26), the best thing we did when he was little was to pay a sitter once a week, every week, so my husband and I could go out to eat. Even if it was during the week, even if it was only to the local cheap pizza joint. |
Anonymous
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Autism is a very broad spectrum and different clinicians will give different diagnoses. My son was diagnosed by Child Find at age 2, but over the years his condition has changed significantly. While he still has some characteristics of autism, I believe that severe ADHD is his primary issue as a pre-teen. He still has the AUT label, as that tends to give him more/better services at school with an IEP vs a 504.
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Anonymous
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1)find a good developmental pediatrician who can give the medical diagnosis and then you can start to get services paid for by insurance. We had to go to a clinical psychologist to get the eval and diagnosis Bc the developmental peds in this area had a six month waiting list (seriously) and each day without therapies is a day lost.
2) get the insurance piece sorted out (you have to file a lot of paperwork proving it autism so they can approve you for all the therapies) 3) find a good ABA therapy provider. Once again, the wait list is long in this area. Hopefully not so much in Colorado. Be sure to get a trained BCBA. ABA therapy has done wonders for our child. 4) find a good speech therapist. Bonus if you can find a good one who is also a feeding therapist. 5) find a good occupational therapist who can work on the sensory issues. I have been to 5 and only one was worth his salt. And he moved! Again this area is so hard with the wait lists for services. All this can be done at the same time the county is doing their eval so you son can get special preschool support and county services. Things I've learned that I wish I knew on D-Day (diagnosis day): -celebrate the small victories that your child makes -things get worse before they get better -tremendous progress can happen, so hang in there -take time for yourself (and hubby like the PP said). You can't eat, breathe, sleep and live autism every day -read the internet for news etc but be skeptical of anyone who says they can cure your child -everyone wants your money and an autism diagnosis is a big target for snake oil salesmen -our kids are capable of so much. Never sell them short and expose them to everything (it's easy to go hermit style once you get the diagnosis). Get out there! When you are ready, also look at alternative therapies. I'm talking vitamins etc not chelation. Unless you're into the more extreme options-we try anything that can do no harm, like supplements, massage, etc. Best of luck OP. If it is ASD or ADHD or something else, it will be a journey and from one Mom to another, I wish you and your family well. |
Anonymous
| Wow! OP, here ...I welcome continued advice, but for ALL of you that have posted responses so far ...seriously, thank you. I don't have a ton of support around me and I SO needed each and every one of your responses today. Thank you for taking the time to read my post, but even more, thank you for your invaluable information and advice. |
Anonymous
| Get as much services now as you can! This is the time to go big. Getting the services are way more important then the diagnosis at this point. |
Anonymous
| Autism is not one monolithic thing. It can end up looking like ADHD in many ways and addressed similarly. You will love your child all the same. Focus on addressing issues piecemeal. It doesn't matter what you call it. |
Anonymous
Yup. My son with severe ADHD has sensory issues and stims. He also had speech and fine motor delays. May as well be autism but he's lacking the social impairment. Do not fear the label. |
Anonymous
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Hello OP. Reading your post reminded me of our journey, which started about one year ago. Our red flag was speech delay. Our son was diagnosed at Childrens and then Kennedy Krieger. For a long time we struggled with the diagnosis (first provisional, now confirmed) because our son didn't check all the boxes of "classic autism" or even mild/moderate symptoms. Even "worse", some of his therapists were sure he was misdiagnosed. For example, he has no sensory issues. But there were other red flags, such as poor eye contact and hyperlexia. What I've learned is that the spectrum is really broad and no article, blog post, wiki entry, or medical journal will describe your kid down to a T. Instead, I think it's better to embrace the diagnosis and get as many quality services and early intervention as you can for your kid. If he is high-functioning, or even if he doesn't have ASD but instead one or two other developmental/communication disorders, the way to treat them is basically the same, but the ASD diagnosis will help you get the support and services he needs.
This is a roller coaster journey, with highs and lows. But we seem to have more "highs" lately, and our son continues to defy a classical diagnosis. For example, this past weekend we had family in town. His cousins (8 and 5) who live away came to visit. He couldn't stop hugging them and asking for them. A week ago we were stressing out about his interactions at daycare with his peers. Trust your gut, and stay positive. Patience will payoff, and get services as soon as you can. Don't forget about you or your spouse either! Sending hugs and positive thoughts to you! |
Anonymous
We didn't have this experience with the school system but with others. Now that my child is older, there are no symptoms that were of initial concern. Language disorders can mimic autism but usually by 6-7-8, its pretty clear as if it is a language disorder, many of the traits are outgrown but if it is autism, they remain or change but have those features. You may want to do a consult with either Steven or Mary Camarata in Nashville (he works at Vanderbilt, she is in private practice). I don't think they are 100% accurate all the time either but they are probably the most experienced and are great testers for kids. If anything, I'd do intensive speech a few times a week if you can at that age. |
Anonymous
No, no, no. This is not true. You have no idea what you are talking about. |