New autism diagnosis
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Anonymous
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Thank you for the post - unfortunately, as soon as we heard there was repetitive speech, I slowly stopped communicating in my native language with our DS. DS was DX at 3 with ASD (Level 1) and I was devastated, paralyzed by fear for SEVERAL months. Before the server shut down last Friday, I wrote a long post about this which was deleted, but I think the original PP read what I wrote and the need to just take things step by step. We're only a year into this DX and no I have not accepted it, my husband has, but I have not. We have not discussed it with anyone except his school and grandparents only who really blow if off like it's no big deal, which is sometimes helpful, but then not at all.
I keep reading from the threads about getting things "confirmed" and having another DX done at some point - it was recommended for us before Kindergarten. The whole DX came as a big shock to us - for a long time we thought it was just a speech delay and that multiple languages were the culprit, but given the lack of sleep issues and SOME, very minor repetitive behavior, his pedi recommended a developmental assessment which I never in my mind EVER thought could be ASD - there were no glaring signs beforehand. Unfortunately (or fortunately), in the past year I have stuck to English and wrote a long post about this in a separate thread a month or two ago about the guilt I feel, severe guilt that I'm working through. It also doesn't help that my husband doesn't speak my native language so that makes things a bit tricky because our priorities are different - in any event, yes the research shows that there's no issue with more languages and ASD but it all comes down to how you want to raise your child and how you prioritize the needs because every ASD kiddo is different. Also their needs change. As our DS approaches - he has made MAJOR strides with early intervention with intensive speech 2-3x a week and some OT and some ABA (3 hours a week) - which isn't as bad as people make it seem especially for young kiddos which is essentially floor time/play based social building if you have a good BCBA. Personally, I know my DS can handle multiple languages but the issue has become that do we want him to be socially behind and having an even harder time communicating at least in one language first...it's tough |
Anonymous
| One more thing to add on the IEP process, we just concluded it but since DS is in a private preschool currently, the IEP would be transferred to an ISP (in DC), which grants (if eligible) free SPT - likely 30 minutes per week or something at the private school, which is better than nothing...we have opted to stick to the private school route for now as we're concerned of the ratios within DCPS (some schools are more crowded than others), but we are also trying for the lottery for Pre-K4 as another option. Private preschools (most anyways) are releasing admission results this Friday - so we'll know where things align for us, but the IEP process was quite comprehensive and the evaluators were kind and understanding, but we came in with various documents already completed and assessments finalized which made the process fairly easy and there was no push back on the types of services. In fact we have shared the goals with DS private providers so we're all speaking the same language. We did not opt to sign off on the IEP however as we need more time to sort out schooling...it's a journey as someone mentioned before. |
Anonymous
OP here. Thank you for sharing these studies. It is very interesting and gives me peace of mind. |
Anonymous
Op here. We’re in a similar boat. Child is in private preschool and evaluating if we should move him to DCPS. We haven't gone through the IEP process since we just receive the evaluation report. Can you please share how long it took you to get an IEP or ISP after the evaluation? |
Anonymous
| Fairly soon - frankly after the lengthy neuropysch/development assessment, the IEP process felt like a breeze, again with a lot of supporting material, it's fairly easy - they essentially collect everything after some preliminary questioning, they are a lot of questions I recall, but if you have a DX, it makes the process fairly straight forward. They will meet your kiddo with you there - and I believe it was only a few weeks after that (after collating information from providers and any follow ups), they draft the IEP and have an "eligibility" meeting - I say it only took about 2 months give or take from the start start to the meeting. It's good to have something drafted and ready to go if in case you want to go the DCPS route at some point. The IEP is good for 3 years, but they did recommend in our case to come back in the summer and reevaluate some aspects and goals since kiddos change often at 3-4-5, so you can change some aspects of the IEP before starting at any point in time...since we did not sign off of the IEP, we didn't get a "placement" for a school and have to apply via the lottery if that makes sense. If you have a signed off IEP, DCPS is required to place your child somewhere - ideally within your ward, you can opt out of their placement and you can opt to wait for the lottery - either way the IEP will go with your kiddo wherever they end up. On the ISP, this is implemented in another department all together - we hear there's a waitlist to access the "Free SPT service" - again we didn't make it this far as we decided to wait... |
Anonymous
Thank you for the thorough response. |
Anonymous
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Hey, as an autistic person I'm pretty offended by a lot of what I'm reading here.
Being autistic isn't a tragedy. Parents, PLEASE focus on finding the right environment for your child-- don't focus on "fixing" the autism. ABA is abuse. -autistic parent of an autistic child |
Anonymous
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"... feels the need to “mask” — a term used by autistic people to describe suppressing their autistic instincts in order to blend in with neurotypicals. It’s a big part of why a lot of autistic people criticize ABA. They say it doesn’t actually get rid of their need to stim or to avoid eye contact, it just teaches them to do the exhausting, self-negating work of masking.
Rodewald says ABA has also had a lasting effect on his relationships and his ability to communicate — or sometimes, his lack of ability to communicate. Rodewald says because he was so conditioned over the years to follow directions — to ignore his own wants and instincts – it’s hard for him to advocate for himself when someone’s doing something he doesn’t like." https://whyy.org/segments/how-a-therapy-once-seen-as-a-victory-for-autistic-kids-has-come-under-fire-as-abuse/ |
Anonymous
Abuse in what way? ABA is very misunderstood and there’s various methods - especially for younger children. This isn’t a flash card, tabletop, memorization exercise…what would you advise to focus on for early intervention? |
Anonymous
OP here. I’m interested in your point of view. What is your advice for a neurotypical parent of a recently diagnosed 3 yo autistic child? How to help him navigate this world? |
Anonymous
Read what autistic adults have written. Educate yourself. There's a ton out there. https://autisticadvocacy.org/ https://www.amazon.com/What-Mean-When-Say-Autistic-ebook/dp/B0BGMJGHWS https://www.amazon.com/Will-Die-This-Hill-Autistic-ebook/dp/B0B7KLLFQ7/ref=sr_1_1?crid=5EFAF4IKGEVZ&keywords=i+will+die+on+this+hill&qid=1677643505&s=digital-text&sprefix=i+will+die%2Cdigital-text%2C76&sr=1-1 And there are loads of Facebook pages out there by autistic advocates! Enjoy the journey, OP. <3 |
Anonymous
Anonymous
| Thanks! |
Anonymous
ABA done right is far from abuse. |
Anonymous
Yeah we read a lot about ABA and we’re very choosy about our practice. Our BCBA and RBT are fierce advocates for our daughter in her classroom. They end up educating her preK teachers (who are lovely but don’t know a lot about level 1 autism in preschoolers) about not forcing eye contact with DD since that makes her uncomfortable, of making sure not to make her “perform” and be like other kids (or better), and that they do not want her to be a robotic automaton. They shadow her in her classroom, help her with tricky transitions by providing various tools such as visuals, first then statements, self regulation techniques. And they help provide light prompting to her as she interacts with peers. One good piece of advice our BCBA gave us is that whenever we worry about her behavior and she’s in a group of peers, take a look around and see what the other kids are doing and if they are acting similarly then she’s acting like a typical 3 YO. This was helpful because 3YO can be a tough age generally! They’ve also do weekly parent training with us which is mostly a listening session to hear what’s going on at home and to brainstorm ways we can support DD. OP, we also do speech (private 1x per week, IEP 1x per week) and get a sped teacher to come to her classroom 1x per week. ABA is 2x per week. All done at her private preschool. And 90% is push in and helping with social pragmatics where she struggles most. She’s made great strides! I was very sad for many months but then it cleared and now I am more worried how others may treat my DD for being different. But she’s totally awesome and has a bright (if unknowable—like all kids truly) future. |