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I think my toddler has AS and I'd like to get him evaluated so he can get early intervention right away if he needs it. Now here's the huge problem: the child's father thinks he doesn't have any sort of autism, that I am making it all up, and if I continue to seek a professional evaluation for him, he will accuse me of Munchausen by proxy. My ex-husband really doesn't know anything about autism or the spectrum. Our son only spends about 18 hours a week with his father, and spends over a hundred hours a week with me, but we have joint custody. (Not counting the hours he's in daycare)

I was thinking of writing a letter to the pediatrician explaining the situation a little bit, and having the ex come with to the child's 18 month checkup in a month, and (in the letter) ask the pediatrician to try to talk the ex about our son's very real signs of mild autism. I'm really scared to bring up the subject of autism with my ex at all. I didn't know I had AS when we got married, and never knew how to stand up for myself. When I learned about AS last year, I found the source of my communication problems and started standing up for my beliefs which upset the status quo of our relationship. Thus ultimately ending the relationship, since my ex only liked me when I had no voice (figuratively speaking).

Is there a reason that you want to write to your pediatrician rather than speak to him/her by telephone? It might be better to speak by phone first, for two reasons: 1) you can feel out how your pediatrician feels about the issue, and get a sense of whether or not you would have an ally; and 2) there would be no paper trail, showing that you had contacted the pediatrician to set this whole thing up.

It's just easier for me to communicate on paper, but you do have good ideas.

I'm the only one who has ever taken our child to doctor appointments, and I have a really good relationship with her. She has already referred our son to a couple of screenings. At 12 months early intervention screened him for sensory stuff but the lady didn't realize what she was looking for. She did an overall development screening, and of course he is actually advanced in every area except communication, but wasn't far enough behind to qualify for services. She didn't even realize she was there to test him for autism and was really surprised when I brought it up. She said his sensory issues weren't strong enough either. (Yeah, like screaming, crying, and shaking in fear over loud noises isn't abnormal.) Just because she didn't observe this reaction in the hour she was here.

At my son's 15 month checkup, we were waiting in the exam room and he was playing with a musical toy. Every time he pushed the button and it played music he cried, but he did it over and over. The pediatrician came in and asked if he was having temper tantrums. I said no and explained about the toy and she observed him crying a few times until I took the toy away. I told her about the many signs I saw in him for mild autism, and she gave me a brochure for another early autism program. But when I finally got in touch with someone from that program, they said they were full and weren't taking any more kids.

I know I've seen other of your posts, but I don't remember exactly what you've said, so forgive me if I'm asking for you to go over things you've already talked about, but ... have you been able to get a referral to an OT who is skilled in the area of sensory processing disorder? This is sometimes the "back door" method of getting services for a young child who is on the spectrum but not getting properly diagnosed. The thing is, the everyday OT who is just looking at fine motor skills may miss the sensory issues - you need someone who is truly skilled in this specialized area. If there is an autism or SPD support group/list in your area, they might be able to guide you to some skilled practitioners.

Similarly, you mentioned communication. An evaluation by a speech and language pathologist might be useful, but the person would have to be truly skilled in the sub-areas of pragmatics of speech and in receptive (as opposed to productive or expressive) speech. Many SLP's are so focused on articulation, that they don't pay adequate attention to the more sublte issues that are blocking communication. Again, an autism group would be likely to be able to guide you to skilled practitioners.

Your pediatrician sounds great! I would still talk to her before setting anything up with your husband. Find out whether she thinks it would be useful for your husband to come in.

My son's father rejects the autism label, even though my son was approved for autism services through the public school and he's received various therapies over the years. I don't discuss the label any longer. It does no good.

My son finds a way to get his basic needs met when he visits his dad. I have professionals to call upon if I ever need to defend the diagnosis in court.

A lot of dads reject any kind of label.

Perhaps you can just work around things for now, going directly into the services you feel your child needs, and not worrying about the label.

I'm not all that convinced, personally, that there is that much to be done at this age, anyway. What your child needs most at this stage is simply an observant parent who understands what he needs. Mitigate the sensory issues by controlling the environment. Mitigate the social issues by working with him directly. Be watchful for the effect of potential co-morbids, like loose joints (making it difficult to learn to write) and seizures. These are all things I did with my AS child at that age, and I had no idea he even had AS. And, honestly, there is very little that could have or should have been different if he had had a label.

If you are in the US, you should seek out your local Early Childhood Intervention service, each state has some. Your pediatrician should be able to provide you with a name/number. They should provide you with a hearing test and developmental evaluation free of charge. The one in California that helped my family out, Harbor Regional, even provided services after the evaluation free of charge to us. We had 1 OT visit and 2 infant stim. visits a week in our home, it was wonderful.

Evaluations for developmental delays are separate from diagnosis's. I was confused too, when my son was young. I thought we had to get him diagnosed with autism first, before seeking services. But you should be able to get help for your child right away if there are any developmental delays, regardless if there is any diagnosis of autism or otherwise. We didn't receive an actual diagnosis of autism for our son until he was 3, but the over year and a half of services he received before that point were essential to him getting to the functioning level he is now at.

That was the place that screened him at 12 months and said he didn't need anything. Even now, I'm not sure they would accept him. DS is doing what he should be doing on paper, but seems Aspergian to me. I have an older NT son, so I'm pretty sure I'm not just a paranoid mom. He uses three different forms of echolalia, flaps his hands, goes into hyper focused states sometimes, and doesn't make enough eye contact. But he isn't 'delayed' so to speak, to the contrary he seems brilliant IMO. And he is speaking quite a lot, and for the most part communicating his needs. But he uses whole sentences in only one way to mean one thing, and doesn't use the words separately, as if the sentence is one long word. But hey, on paper, he is using 3 to 5 word sentences, and that is quite advanced. And honestly, he has such a large vocabulary, I don't think I would notice if he 'lost' any words.

Do you live in an area with a good Children's Hospital? Some of them have Developmental Clinics and/or Autism Clinics, where young children can be assessed by people who are truly expert in these areas. Some also have OT, PT and SLP departments with people who are experts in assessing and treating young children with sensory processing disorders and on the autism spectrum. If you are near a facility like that, and they do see what you're seeing, the early intervention folks have to consider any report that you receive from the developmental pediatrician/OT/SLP at that facility, particularly if you come away with a diagnosis. But if you can get services through a facility like that, those services will be far superior to any you would get through early intervention!

I know about a lot of local resources for autism therapies, but my real difficulty is with my ex. He is completely irrational. And is, I think, still trying to bully me.

If a highly respected autism center diagnoses your child as being on the spectrum, it will be very difficult, if not impossible, for your ex to maintain an allegation of Münchhausen by proxy. The diagnosis of your child pretty much negates any charge he would try to bring against you, since a qualified expert will examine the child, not simply go by what you say. Denial by fathers is common, and autism is often hereditary. Since you've already said that you have Asperger's, it is not surprising that your child could be on the spectrum too, nor that you would recognize it earlier than other parents, or than other people in your child's life.

You're probably right that he's trying to bully you, but most bullies back down when they find out that they've met up with someone who is not easily bullied. Don't let him bully you - be prepared, speak to your pediatrician, and take care of your child in whatever way you see fit. As long as your custody agreement/order doesn't require his consent for you to take your child to see people, you can take him to whomever you think appropriate. If your pediatrician is making referrals to these providers (and it sounds like she is very willing to do that), your ex would be hard pressed to try to block any assessments. If you were seeking controversial treatments (like chelation, for instance) that would be entirely different. But there is no danger or serious controversy in seeking an assessment or treatment for sensory processing or speech/language.

I am a little confused by your description of your experience with early intervention. Are you saying that you had an initial screening by an intake worker, or some such individual, but never saw an actual OT or Speech/Language Pathologist? The intake worker is basically a gate-keeper who decides what areas should be assessed, and really has no expertise at all. They aren't doing assessments per se, just preliminary screenings. When the issues are the kinds of issues that you are seeing in your child, these people really can't "see" them. They are looking for significant delays in fine motor, gross motor and speech (articulation). Once you get past them, an actual professional (OT, PT, SLP) performs an assessment. The OT who tests a child with fine motor delays will also pick up on sensory issues, but the gatekeeper will generally keep out kids like yours who don't have fine motor delays but do have the sensory issues. Early intervention has strict guidelines as to who they can help, and the child has to have delays of at least a certain percent - it used to be 25 percent, but I heard it is now even higher!

yep, so very true

I'm really not sure of the qualifications of the person who screened my son at 12 months. All I know is it was a lady from early intervention who came to my house for an hour and asked my son to perform a series of tasks... which he did great on!

1 hour is generally not enough time to dx someone who is higher up on the spectrum....you need to get that child to someone qualified to dx-not an early intervention worker

It does. I wrote it into the custody agreement that we both need to agree on any medical decisions. We do a lot of UNmainstream things like not vaccinating, and not giving antibiotics for ear infections. I don't want my EX taking the kids to the doctor and getting talked into vaccines or something like that. Even though he agrees with me (or at least defers to my judgement) on these issues.... for now anyway.

That's a shame, for you. Check the language, though, to see whether it restricts you from consultations, or just from treatment. Depending on the language of the agreement, you might be able to obtain an evaluation without his involvement, as long as you don't get any treatment. But if the language is unclear, don't push the boundaries - you're at the beginning of this journey, and you have years of having to work together for the sake of your son. You don't want to start a "war."

I see why you want to get your ex in front of the pediatrician. I think it would be a good thing for you to contact her, preferably by telephone, to ask her about whether she thinks she can use the appointment to express her concerns about your son's issues, and to urge another evaluation - but not by the IU. If the "A" word will be too charged, as a starting point, maybe she can refer you to an OT for a sensory integration evaluation and an SLP for a speech and language evaluation. Ideally, those would be done at a facility where the bigger picture would not be overlooked, and it would be a natural progression to the rest of the evaluation. Or, maybe since she's the professional, your ex would accept from her the possibility that your son needs to be properly evaluated for autism, and that a one-hour screening by an unqualified paraprofessional is not a substitute for a proper evaluation.

Good luck.