Almost 5yr old DS - autism diagnosis pending
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Anonymous
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Just recently found out that my son is likely autistic, but his dev ped decided to hold off on the diagnosis until we schedule a neuropsych exam. DS passed two intelligence tests during his exam with the dev ped, but demonstrated some repetitive behaviors. We also talked about issues such as weak or inconsistent eye contact, low muscular tone, his shyness with adults (including people like his teacher and preschool director), and lack of emotional reciprocity with some relatives. The doctor emphasized that he's high-functioning and said several times that he's a very smart kid. DS has done well in his preschool class this year -- follows directions, participates in activities, plays with other kids (but still not very social), talks in class (although most think he's just very shy), is good at self care (i.e. toileting), rides his bike with training wheels, etc. He's also overcome some shyness and now greets people when we ask him to do it.
I'm sharing all this to ask, what should be our next steps? We don't have a neuropsych eval scheduled yet, and we don't know how long it'll be to get that appointment. If we have three to six months until we get that appointment (just speculating), what should we do in the meantime? Dr recommended play dates with other kids and 1 on 1 play with parents, but didn't recommend ABA or other formal therapies yet. What would parents in our situation do? Should we hang tight on until we get an actual diagnosis? Or try to schedule some sort of therapy for him even though he hasn't been formally diagnosed yet? |
Anonymous
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OP- What were the reasons you brought him to the developmental pediatrician? What areas did you feel were behind?
That may be a good starting point (if, for example, speech is delayed). |
Anonymous
Lack of social reciprocity, repetitive behaviors may have been the motivation. Not all kids on the spectrum have speech delays. |
Anonymous
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We were concerned about a variety of things - we couldn't put our finger on what the issue was. He seems to lack emotional reciprocity - his grandparents are wonderful, very affectionate, but DS was surprisingly distant with them while his sibs easily showed affection. He is also a little distant with DH, but DS has improved and has increasingly shown affection with hugs and things of that nature. He loves me and shows his affection readily with hugs and verbal affirmations.
He's very shy, but can handle himself in preschool and church Sunday school. He'll now greet others when I encourage him to do so, but he still can't seem to do it happily or easily. He plays with other kids, but sometimes slinks back and plays by himself. He lacks imaginative play and hardly ever engages in pretend play. When he does engage in pretend play by himself (i.e. with a lego car), he'll try to talk and use imagination, but it's not as coherent as his siblings ("Aaah!! Eeh Eeh Ehh! You're under arrest!" - so a mix of nonverbal sounds with words). Kids like his siblings, and like him too, but I think kids find it harder to connect with him and play with him. For DH and I, we had a hard time distinguishing shyness from autism. |
Anonymous
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I wouldn't worry too much about the formal diagnosis at this point although this may be difficult. The wheels are in motion. You'll schedule a neuropsych evaluation and that will shed more light on his strengths and weaknesses.
In the meantime, it sounds like he is being engaged physically and intellectually and isn't falling apart behaviorally at school or at home. If this were the case, then ABA would probably be appropriate. In terms of school, if you don't have one already and will be going to public school, you may want to determine if he'll need an IEP so he can have adequate support in school. Sometimes when kids are intelligent and don't present as an obvious behavior problem, they don't qualify for an IEP at the get-go. You can still initiate the IEP process if you're attending a private school as well. Contact your local elementary school on how to initiate the process. For now, I would take the developmental pediatrician's advice and try to give him opportunities to practice his social skills. I find this book helpful: https://www.amazon.com/Its-Much-Work-Your-Friend/dp/0743254651/ref=sr_1_1?ie=UTF8&qid=1495595715&sr=8-1&keywords=it%27s+so+much+work+to+be+your+friend |
Anonymous
| Thank you for your feedback. DH thinks we need to set up appointments right away, but I'm of the mind to wait for a formal diagnosis. Thank you for the book referral, as well. I'd love any other book referrals about HFA. |
Anonymous
| If social reciprocity is his biggest area of need, I would try to find a speech therapist to facilitate a dyad so he can practice social skills with adult facilitation. |
Anonymous
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You can start the IEP process independent of his neuro-psych. The IEP process will take a while and the school will want to do a lot of testing for themselves. If you started now, you would reasonably expect to get something in place in the fall. If you start in the fall, it will be after the new year at the earliest. That may be fine for you, just letting you know.
We have a similar DS who's in 3rd though he has behavioral problems stemming from anxiety and rigidity. In your shoes, I would look at finding a good social skills group and just looking for activities / sports / interests that can expand his social experience. |
Anonymous
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I agree that you need to start the IEP process now instead of waiting for the neuropsych. I have a similar child with Asperger's/ASD/ADHD whose main issue is social pragmatics and he has had an IEP since prek4.
It is much much easier to get an IEP in preschool prior to K especially if your child has a high IQ and is not behind academically because preschool is all about socialization not academics. DS is 9 in 4th grade now, fully mainstreamed and doing great academically and socially, has lots of friends, because of the supports and services provided in his IEP. ABA was never recommended for DS but he gets OT (zippers, utensils, handwriting, etc when he was younger. Touch typing speed now) and lots of social supports including pragmatic speech with SLP, social classes with the school counselor using the Superflex curriculum, lunch bunch, etc. You want to get your DS support via an IEP before K since it is very difficult to get a kid an IEP if they are at or above grade level academically in K or higher. |
Anonymous
In terms of appointments, let your DH take the lead and set up some of the therapeutic appointments, e.g., speech or OT. This is an easy area of compromise and it can't hurt. It's also wonderful that you guys really sound on the same page in your desire for getting help for your son. The Lavoie book isn't specific to HFA rather applicable to kids with all kinds of SN in terms of developing their social skills. I recommended it b/c it has a nice checklist in the back on how to host a play date. This is a clip from the author discussing play dates: https://www.youtube.com/watch?v=ODxwotH5IEo |
Anonymous
GREAT clip. Thanks. I love Rick Lavoie. He's so informative and gives such great advice. |
Anonymous
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It sounds like you are well on your way. I would definitely set up the appt. w/ the neuro-psych so you can get a complete diagnosis. In the meantime, I would read up and get information and continue to engage and play with your son and help him engage and play with others. You may not be able to get therapies set up for him until you have an official diagnosis of some sort.
I agree with the other posters too who suggest you begin to see how they are with meeting special needs students - talk to the school, talk to other parents. Overall though teaching social skills will go a long long way no matter what! |