New ASD/ADHD Diagnosis - Overwhelmed

[Anonymous]

We just received an ASD (Level 1) and ADHD diagnosis for my 8 year old son. I'm a bit overwhelmed in trying to find out how to begin coordinating resources for him. The recommendations we received were Speech Therapy for some speech delays and Occupational Therapy to enhance his fine motor skills. We also will need to work with his school team to create an IEP. And then a more generalized therapy for the ASD and ADHD.

Would we typically seek these types of therapy with one provider (or provider group)? Or are there specialists that we should seek in each type of therapy? Also, how much of these things would need to be in place to support development of his IEP? He'll be going into 3rd grade and I would like to make sure that his start to the school year is positive. I'm just trying to get an idea of where to start. Thanks in advance for any advice and guidance.

[Anonymous]

We hear you, and lots of us have been there. It can be overwhelming.

Let's back up a second though. I hear that you were given the recommendation for speech and OT.

Do you actually need an IEP yet? Or more "generalized therapy" (your words) for the ASD and ADHD? Or are you just feeling like "I just learned there's something wrong with my kid, so I need to do all the things to try and treat it?"

If you got to age 8 without needing a diagnosis, I'm going to assume both the ASD and ADHD aren't severe (for relativeness, my DS was diagnosed with ADHD at age 3 - it's pretty severe - we still never did all the therapies you're discussing above). Typically, on this board, with the ADHD/ASD 'non severe' diagnosis, most people have treated the symptoms, not the underlying diagnosis. Just because you find out your kid has ADHD, doesn't mean there's some kind of "ADHD therapy" you start doing. What are their symptoms? Bad handwriting? Then do speech? Disorganization? An exec function coach or maybe your school offers classes. Struggling in school? Maybe a tutor, or maybe if parents don't work, you can figure this one out yourselves with 20 extra minutes a night. Social challenges? Maybe a social skills group, or maybe just an activity that supports those skills (lots of parents of ASD kids like scouts, or chess, or robotics). And chances are, by age 8, you guys have already been working to support those deficits without doing anything formal. Or maybe you already have done speech when he was a kid. Do they definitely need an IEP? My kid with severe ADHD has been fine with a 504; basically, that doc gives him a bit more flexibility on handwriting, seating, test taking etc. which is all he needs to do well enough.

You'll also hear a lot of people on this board who declined to do many of the therapies that are "recommended", because they determine some tradeoff of (i) not healthy to be that busy and stressed for their kid and family; or (ii) therapies aren't actually doing anything. You'll also find there is no "one shop" expert for this diagnosis, so if your DS was diagnosed by a dev ped or neuropsych, they probably told you "here is the generically recommended therapies". But no one is actually saying you need to do them all. It's like when I get frequent UTIs, my doctor hands me a piece a paper with 50 recommendations, including 'limit alcohol, take abx before sex, wear loose fitting clothes". It's basically a throw the kitchen sink approach, and no one thinks you'll do all of them. When your kids get this diagnosis, there's a huge rabbit hole of therapies you -could- do, and every one of those therapists is going to tell you their therapy is amazing. But only mom and dad get to decide what's worth it to their family.

Point of all this is he's the same kid he was last week before you had a name to describe why he is different. For whatever reason, you took him for an evaluation. Whatever your concerns were going into that evaluation, support those concerns through treatment. Which may be therapy, or medication, or adjusting your family routines, a 504 or IEP, or something else altogether.

[Anonymous]

I agree with a lot of what PP said, although I wouldn’t assume that because your DC was diagnosed a bit later, you don’t need support or the recommendations are generic.

The IEP is completely separate from any interventions outside of school. I would pursue the IEP simultaneously with getting other therapies in place- both take longer than you think they should. Your school system should have a parent resource center with materials about the special ed process in your district. The first step is to email the principal and say you just received a private evaluation and you would like to request an evaluation for special ed services.

As for the other services, I would start with the one or two addressing the issues you feel are most impacting DC’s life right now. Figuring out what insurance will pay for, finding providers that fit into your schedule, etc all take time and a lot of mental energy.

I’m not sure what you mean by “general therapy”. I have found it more useful to really focus on what what specific things we need to work on - the more specific the better- and then find the best provider to address. Also, sometimes the best intervention is parenting coaching rather than a kid-focused.

Good luck! My kid was diagnosed at age 11, and it’s important to remember that it’s a marathon, not a sprint.

[Anonymous]

By "general therapy" do you mean seeing a traditional talk or play therapist? I'm not sure what your son experiences but my child with a similar profile and recent diagnosis has developed a lot of social anxiety because of the general communication differences and not "fitting in." Going to talk/play therapy has helped a lot with his self-esteem and self acceptance. I have also found OT to help a lot.
This is not related to your questions, but I found this podcast to be a really gentle entry to learning about differences in my kids:
https://podcasts.apple.com/au/podcast/exploring-neurodiversity-with-adina-levy-from-play/id1625478932

I also love Tilt Parenting!

[Anonymous]

First PP was such a great post. Really you’re not treating the diagnosis. You need to attack the problems that the conditions are causing for your child.

If your child has gotten this far without speech and OT in school, it’s highly unlikely that you’re getting them now. As to whether you go private, a lot will depend on what you are trying to accomplish and how much time, money and insurance you have.

As for an IEP, virtually every single person who diagnoses a kid with ADHD and ASD will say get an IEP. But it’s not that easy. You have to have a diagnoses, which you have. But there are two more prongs to the test for eligibility. The condition has to interfere with your child’s ability to access the curriculum and you child will have to require services to assist with accessing the curriculum. You haven’t posted anything except diagnosis so it’s hard to give you advice or share experiences.

If your child doesn’t qualify for an IEP, they may qualify for accommodations through a 504 plan.

Last thing. Your child will not have anything in place for the start of the school year. Even if you ask on Monday for a meeting, they have 30 days. At the meeting they will decide if they are going to evaluate and what types of evaluations are needed. The. There will be 30-60 days for that to get done and you meet to review and decide as to whether your child qualifies. Then another meeting will be set to develop the IEP. You’re four month in by this point. So be prepared to support your child without specialized services. But most 504 accommodations are best practices and your child is likely to benefit from that regardless of whether a plan exists.

If/When you get to the point of IEP related meetings you post here, lots of us have lots of experience and can offer advice and support.

[Anonymous]

It can be really overwhelming with a new diagnosis. I usually recommend this book to friends and other folks who have just received a new autism diagnosis for their child (I'm no way affiliated with the book, just found it to be a quick and easy read as a parent, and it's very helpful to deal with all the new information, which can be overwhelming): After Your Child's Autism Diagnosis by Sally Wilbanks.

[Anonymous]

Also, for therapy, we found it helpful to find occupational therapists and speech therapists who have experience working with autistic kids. There are some great ones out there. Get recommendations in your area for good practices. Sometimes, a practice may have occupational and speech therapists at the same place, which can be helpful for them to coordinate as a team. Or, you can work with an OT and ST at a different practice and give them permission to talk with one another and share notes so they are aware of what's going on generally.

The biggest thing may be insurance--you can check and see who is in network and what level of coverage that your insurance covers for out of network providers. Remember that once you have an autism diagnosis and OT and ST are recommended as medically necessary, insurance must cover the therapies.

If you get an IEP through your public school, you can see if OT and ST can be provided in school. But unless you are in an exceptionally good situation, the OT and ST services through school may 1) be very limited in the IEP process; 2) may not ever be delivered or be consistent if there are staff shortages; and 3) you may still want to supplement with private OT and ST to ensure good services (especially if you can figure out insurance coverage).

In my experience, it's very helpful to get an IEP in place. If your child has been diagnosed for ASD, they'll qualify for an IEP, and if there are specific accommodations that would be helpful in school, along with services, that's the best way to ensure that the school is required to provide them, and also a good way to create a team of support at your child's school.

[Anonymous]

My child did not need 9 out of 10 things the evaluator recommended. They try to overload those evaluations so they cover all the bases but you should prioritize based on your own observations, feedback from others who have worked closely with your child like preschool teachers and your time and money. I

[Anonymous]

OP, from your post it sounds like they recommended speech therapy because your dc has some speech delays? I'd defenitely do that.

Are the fine motor skills impacting him at school? If so, he may get OT in his IEP. Actually, he may get ST at school also. But it's worth pursuing private therapies also. Both these therapies were so beneficial to my dc with asd.

My dc is no longer needing those but now does what I think you are calling 'general' therapy. She sees a therapist (via zoom) who is helping her with rigidity and social stuff. In your case, I would consider this at some point but I'd priortize the ST and OT.

I would also pursue the IEP. Especially since he has speech and motor skills delays, which directly impact school.

[Anonymous]

It's a marathon, not a sprint. And yes, I too have been there!

I think the most helpful thing for me was to get awesome referrals from the neuropsychologist and get on a waiting list.

Speech therapy might be the easiest one to start out with, but you might want to start out with the stuff that's causing the most problems.

My kid had huge tantrums, so we started seeing a psychologist who specializes in kids on the spectrum.

Try to sit on the therapies so that you can gauge quality and reinforce skills as much as you can at home.

I feel like after I got the neuropsych report, I slowly but surely got my "degree" in learning how to help my kid. I took classes, joined groups, talked to parents, moved schools, etc.

Take your time. Above all, take care of yourself because you're your kid's most important advocate, teacher, and ally.

[Anonymous]

Can you afford private? Call Josh Gwiliam at Commonwealth Academy in Alexandria, VA nd ask him what option you have. If C/A isn't the right school (my DD went there), he will guide you to the appropriate one.

[Anonymous]

Where are you located OP? Find a private speech and OT provider near you and start with that. Those services will honestly be more helpful than anything you get in the IEP.

Obviously look for speech and OT providers th at take your insurance, if there are any. If there aren’t any, fine someone close to home or school. All the appointments take a lot of time.

You will likely need to get on a wait list. Just start with speech and OT, and then you can go from there.

You’ve got this.