Aspergers child denied services

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Hello,
I am the proud mother of a 3 year old daughter. Since she was very young (18months) we noticed she was different. We sought out Early intervention and she recieved services until she reached 3 at which point we applied to the preschool transitional program. She is very high functioning so she was denied services. My husband and I as well as our doctor and my daughters occupational therapist thought she needed further services to help her interact socially, so we fought to get an extended evaluation. The state evaluators told me "Although she does exhibit autistic and hyperactive behavior she does not fit the criteria for services at this time." We were stunned. She does not make eye contact, she does not play with other children at all, she has numerous repetitive/obsessive behaviors. So we sought out a private opinion. We brought the evaluations done by the state to the hospital providing the evaluation. They conducted their evaluation and informed me that my daughter has Aspergers Syndrome. I was relieved to finally get an answer. I immediately called the early childhood center that had denied her services and they told me they were only required to take the private evaluation into consideration and that they would review their decision. What can I do to get my child the help she needs??? I do not want to delay this any longer. Any help would be appreciated. Thank you!

I'm curious what help you think that she needs.

Based on your post, it seems that you are worried about things such as making eye contact, preferring to avoid children, and stimming. I don't want to sound derogatory, but these are silly, and superficial things to worry about. There are far more important things to worry about, such as teaching your daughter to understand and respect others, or teaching her to understand and handle her emotions. That is far more important then teaching her how to properly interact socially.

I am not opposed to therapies, but I think you need to first be clear about what it is that you want to accomplish. Simply being different is not cause for alarm.

It would help to know what state you are in. Special ed laws vary state by state.

In these current, tough economic times with 14.5 million people unemployed and many states facing critical budget crisises, many states need to cut spending to avoid raising taxes. With limited state funding, states are being forced to do what they can with little money.

What are you looking for your already high functioning daughter?

I have very mixed feelings about labeling a child so young as having AS or being hyperactive or anything like that.

I understand that parents are very in tune to their children and I do think in some situations, early intervention is better than not, but some children really don't need it and will develop in time at their own pace, and it kind of upsets me that some parents are so impatient with their children or do not accept certain traits their children exhibit as just part of their personality.

People with AS are of average to high average intelligence and the only thing I wish someone helped me with when I was younger was social skills.

But your daughter is 3. That's awfully young to pass a judgement on her and try to make her socialize in a particular way.

I really don't think any social skills help would have done me any good until I was about 7.

I am really surprised by your responses on this thread. I think your child probably does need services. Unfortunately, as a pp said, the budgetary constraints of certain areas causes many, many kids to fall through the cracks. You need to fill in these cracks. Start to educate yourself on how to help your child. The OT should be able to help. With your medical dx of Asperger's you may be able to qualify for state insurance or other services. Find private providers to help your child.

Good for you for being proactive at age three and trying to help. My advice would be to focus on the social skills heavily, look at her diet, work on the sensory difficulties now. It may very well be too early to dx Asperger's (I believe an AS dx at that age is shaky at best not because the markers aren't there but the true presentation really comes to light when there is intellectual interaction) your daughter does have autistic tendencies and those issues should be addressed.

We live in MA. My daughter is one of four children. We noticed early on some major differences in her as compared to her siblings and we were fine with that. Every child is different and her being quirky adds to her charm in my book. My concerns are her social skills. She is not only withdrawn from her peers but tends to be aggressive to her siblings. We are looking to get her into a pre-school program that is going to understand her sensory issues and social issues. There is such a program in my state but due to budgets they are more focused on severe cases. We have looked into several other private preschools however, in our area none seem to be equipped with a staff that can address her needs. (She is aggressive, she is sensitive to touch, she shuts down easily when reprimanded, she is often hurtful with things she says, she has set routines that she needs followed etc.) We have had all of our kids go through preschool so naturally we want her to have the same experience. However, we want her to be in a preschool where they won’t assume she has poor discipline at home, or has poor manners, when that is not the case. My feelings are that if we begin to help her develop her social skills now where as she is so young, she will have an easier time as she gets into school, which is what we felt necessary for all our children. We are trying to be proactive in making sure that she has all the support she needs to have a positive experience as she begins school. I am currently doing what I can at the home level. We have educated ourselves and we have met with her OT on some tips to deal with her sensory issues. I will fight to make sure she does not fall through the cracks. I have contacted my state representative and my daughters OT is advocating for her as well. Thanks for you input!

There was a law recently passed in your state with regards to medical insurance coverage. Have you looked into private therapy for the time being? I know it's not idea but at least you can get her some intervention.

If you'd like I have a friend in MA and could ask her if she has any good contacts for playgroups and such.

What are her sensitivities? I wouldn't be surprised if she's withdrawn and alternately aggressive because she's uncomfortable.

As long as you remain her advocate, she will not slip through the cracks. Be confident as her parent that you will help her to interpret and live in the world.

Her sensitivities are she does not like too many voices at once, such as more than one person speaking at a time or even people singing. She will cover her ears when people sing or she will hit them. She does not like her head or hair to be touched. She does not like certain materials. All her clothing must be soft and tagless. When she is overwhelmed she has enjoys rubbing lotion on herself. When she was younger this was not just lotion but anything "spreadable" apple sauce, ketchup, paint etc. Her OT suggested giving her lotion to outlet this need appropriately so this stuck as something that soothes her. She also needs a good amount of personal space. If children are playing too close to her she gets aggressive.
We are considering private therapy if we are unable to get her into the preschool program but we are hoping it doesn't come to that. If you could get me information on some playgroups that would be fantastic! Thank you!

Well then, it sounds as though you are working to understand your child's difficulties, and that is a wonderful thing. I must commend you on your attempts to better understand and help your daughter.

But I have to question the idea that she must get some sort of services at a preschool. As you said yourself, her issues is that she is getting overwhelmed by all the people. And getting overwhelmed makes her lash out. Putting her in preschool, and surrounding her with other children, is only going to make her more overwhelmed and lash out more. The problem you are having isn't going to be solved by provoking her with young children until she lashes out at them, regardless of what preschool she goes to.

Perhaps I should clarify a bit. Based on your post, it seems you believe that it is important for her to go to preschool, in order to learn 'social skills'. This is presumably because you feel that learning social skills will include things like not lashing out and attacking others when they get too close. But unfortunately, it doesn't work that way. 'Social skills' are things like learning how to take turns, play games, and get along with other people. If the problem was that she couldn't make friends because she didn't know how to play with the other children, then teaching her some social skills would help. But the problem here isn't a lack of social skills. The problem here is that she is getting overwhelmed by the environment, and she is lashing out accordingly. Teaching her to take turns, and play games, will not solve this problem. Thus, the solution to your problem is not going to involve teaching her 'social skills'.

The solution to the problem is to give her some more space, and allow her more time to get used to other people in small batches, so that she can desensitize to other people without getting overwhelmed. Once she is doing better with small groups of people, for limited amounts of time, you can then try getting her into larger groups of people for longer periods of time (i.e. preschool). To that end, I would recommend that you postpone the idea of preschool for another year (or half year), and focus more on smaller groups until she is more comfortable around people. Small play dates, or playing games with siblings, is a good way to start. You can easily organize play dates with neighbors, or have her spend some time with her siblings, for free. You don't need to go to a private preschool or anything like that.

Beyond that, I would also work with her, and teach her some better ways to deal with her feelings when she is getting overwhelmed and wants to lash out. What should she do in those situations? Perhaps taking a break, avoiding other people, or taking out her tension by attacking a stuffed pillow would work. But I must point out that part of teaching her to avoid lashing out also involves keeping her out of situations that are too overwhelming for her to deal with. And it appears that she is still too young an immature to handle preschool.

As I said before, I have nothing against helping your child to deal with their difficulties. I am just opposed to the idea that she needs some sort of professional services at preschool, when the problem is simply trying to stuff her into an overwhelming environment before she is ready. You said that she is acting withdrawn, and defensive around other people. Getting her into a preschool program seems like dropping her in the deep end of the socializing pool when she is not yet comfortable with water.

If I am not making sense then let me know, and I will try to rephrase this differently.

You actually make perfect sense. I never even thought about it that way. That is actually a very good idea, thank you! I guess I am just so afraid of doing nothing that I am trying to do too much before she is ready.

I think Tracker's advice is excellent. The dx of Aspergers seems unusual at such a young age, but I do believe that it's beneficial to find out as early as possible if your child is on the spectrum and/or has sensory issues, because that's what allows you to start understanding their needs and advocating for them. But as Tracker and others said, that doesn't mean you need "intervention" or services per se. You just need to learn more about your child's unique way of being, so you can anticipate and recognize their challenges and gifts along the way.

If your child is experiencing sensory overload, you may want to check out the books Raising a Sensory Smart Child, and The Out of Sync Child, and consult with an Occupational Therapist qualified in autism spectrum and SPD issues.

The sensory issues are a big one, especially for a three year old, and it is really important to start by honoring them, as Tracker has noted. She needs to be in environments that are comfortable for her and manageable so that she can learn and practice self-calming, start identifying stress, and develop appropriate responses. Early intervention preschool isn't really designed to provide those things, and that may be why the school isn't seeing a strong need to place her at this time.

Not getting services today won't mean she won't qualify tomorrow. As the kids get older, the list of qualifiers change. A common issue for AS kids when they start in elementary school is pragmatic speech, and you will find that working with a speech specialist is where your daughter will also get social skills help.

My AS son did private pre-school, which was before we knew he was AS, and it wasn't a very good experience for him. At the time, I picked the kind of place he was drawn to - full of bustle and activity. I've since learned that children aren't always drawn to what is good for them, and I think he would have done better at the preschool my daughter later attended, where the instructors were much more pro-active in preventing behavior issues, maintained a much calmer classroom, never spent classroom time doing prep work (the ratios are not always what they appear to be for that reason - some preschools count teachers in the room but not actually focused on the kids, and teachers on breaks), and there was no mandatory nap period (the horror of my son's existence). If you keep your eyes open on the local private preschools, you might see one that will be able to accept her as she is, and give her a positive experience. If you find that gem, go for it. If not, she'll be fine doing the things at home the others suggested. A room full of noisy and predictable kids is not a young AS child's idea of a pleasant place.

All in all, the best thing that can be done for an AS child in the preschool years, unless there is an obvious language delay or other severe developmental problem, is for someone to understand and identify their unique needs. You can't accommodate what you don't know, and there isn't a formula chart that says every AS child is sensitive to B or responds best to D. You've made great progress if you already know things like her need for lotion to self-calm, and you are already on the right track; identifying those sorts of the things are the keys to making her future school time more successful.

Good luck, relax, and enjoy her. Services aren't everything, although they most certainly will factor prominently in her life as she moves through her school years. You've got your diagnosis, you've got OT going, and you're ready to hit the ground running when the time is right.

Last edited by DW_a_mom on 24 Aug 2010, 1:25 am, edited 1 time in total.

Oh, and to any parent new to the AS diagnosis, or not new and still finding new challenges, I highly recommend the book Tracker has created: http://www.wrongplanet.net/postt134843.html

Tracker is one of the true gems of this board, a young man who goes out of his way to help parents understand AS as our kids are actually living it, and not as the experts have observed it. I hope he'll get enough word out to eventually sell lots of books (but for now you can still download a copy for the stunning price of ... nothing!).

She sounds similar to me, however I did not have the aggression. I can tell you that forcing me to socialize at that age would not have gone well though. First of all I had no idea I was doing anything "wrong" by not socializing, and second of all, at that age I had no concept of the whole thing, such that I would not have understood what the person was trying to teach me. Further, I would have gotten stressed when forced to be around too many people for too long and interact with them in ways which were not natural too me, and I would have had a massive "meltdown"

I didn't really start thinking of the concept of friends until first grade and only then would I have been able to reap the benefits of any social skills training.

Your daughter also seems to suffer from hypersensitivity. Not much can be done about it. Respect that certain things bother her, and she will probably out grow some of it as she ages.

And who doesn't cut tags out of shirts anyway? I don't see how anyone could possibly stand a tag in a shirt.

Hmm... fluffy earmuffs with the band removed and handles sewn onto the outside might help the banging her ears thing. Make sure she has pants with big pockets and can keep the 'mufflers' with her for noisy places. Make a pair for yourself too and demonstrate how to use them to reduce sound the next time there is singing (plan it out that you can control the singing if need be).

I always found that distancing myself from 'crowds' and spinning in a circle was a good way to stop them from following me when I needed space and couldn't explain my need.

As for head touches, I still have issues with that, and I'm an adult now.